Into the bleak mid-winter

winter sunset with geese flyingI have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…

It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.

Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.

Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.

The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.

Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.

But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.

The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.

And that’s fine. It’s just fine with me. So… onward.

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Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

New NFL concussion guidelines

The NFL has recently released new stricter concussion guidelines.

The new policy states, in part: “Once removed for the duration of a practice or game, the player should not be considered for return-to-football activities until he is fully asymptotic, both at rest and after exertion, has a normal neurological examination, normal neuropsychological testing, and has been cleared to return by both his team physician(s) and the independent neurological consultant.”

This could be a really good thing.

I hope.

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.

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.

My books have arrived from the library!

I’m really stoked. I finally managed to find a library copy of George Prigatano’s Neuropsychological Rehabilitation After Brain Injury and Prigatano & Schacter’s Awareness of Deficit After Brain Injury.

I’m sure it sounds odd for me to be so excited about getting them from the library, but these are books I’ve been wanting to read for some time. I first came across George Prigatano a little over a year ago, when I was researching brain injury and wondering why in heaven’s name I had never realized there was something “up” with me. I mean, I had a lot of problems when I was a kid and throughout my adulthood. Problems with memory, problems with mood issues, problems with keeping track of stuff, problems with temper, problems with freaking out over every little thing, problems with money management… I get tired just thinking about it all.

I should have realized a long time ago, that all those problems couldn’t possibly have been due to everyone/everything else. Something had to be “up” with me. But no… my broken brain was convinced it was everybody else, not me, that had the problem(s).

Anyway, now I’ve got the books on loan for three weeks — and the past-due fees are high, so I’d better get reading. I’m sure it’s considered a little “blasphemous” and presumptuous for me to be reading up on cognitive rehabilitation and advanced topics that are supposed to be beyond this layman’s brain, but I don’t really care what other people have to say about it. I have access to the information, and even if I don’t understand everything, at least I’m going to check it out.

My wrists are doing a little better. I’ve worked almost 30 hours in the last 2 days, much of that time spent typing, so I still have more resting I need to do. But that will come. Right now, I want to celebrate.

Celebrate life. Celebrate recovery. Celebrate cognitive rehabilitation. I saw my “neuroshrink” today, and we actually had a really good session. I was talking about different events of my past, and I actually got a laugh out of them. A good, hearty, spontaneous laugh, too. In the past, they’ve been kind of reserved and distant, like they were checking me out… not sure if they were going to keep working with me. But today was a good session.

They told me, in the course of our 50 minutes, that considering everything that’s happened to me, my life is a great triumph, not a tragedy. And yes, it’s true! My life is a tremendous triumph, and I’m feeling really grateful tonight that I’ve been able to do as well as I have.

How I’ve been able to do this well — bounce back from multiple mild tbi’s, including sports concussions and falls and assaults and car accidents, and build a life that’s full of activity and love and productivity and, well, happiness… I’m still trying to figure it out.

But if I had to chalk it up to anything, I’d say it’s just stick-to-it-ive-ness. Never giving up. Being tenacious. Stubborn. Hard-headed in the right ways. Trying and trying and trying some more. And never settling for less than I want — and deserve.

Just keeping going… in some ways, that’s the best rehabilitation of all. None of the other approaches actually work that well over the long term, if you don’t have this as the foundation.

But still, tenacity aside, it’ll be good to check out these books. It’ll be good to have some input that comes from outside my own head and immediate experience.

I’m also looking forward to reading more writing from George Prigatano. I have been a huge fan of his for quite some time, and what I’ve read from him I’ve really enjoyed. It might sound odd to talk that way about a neurologist, but everybody’s partial to something. Some folks are into Japanese art, some are into road bikes, some are into Turkish ceramics, some are into Dice-K, some are into the Cavs. I’m into neuroscience. Particularly cognitive rehabilitation after brain injury, and all the fascinating aspects of life that go with it.

And I do mean “fascinating”. The brain really is the final frontier, and despite the fact that everyone has one and we all love to talk about ourselves, precious few of us — scientists and doctors, included — seem inclined to talk about our brains and the way they impact our lives. It’s as though there’s this huge curtain drawn between our white/gray matter and the rest of us… a kind of holy-of-holies veil that keeps us from approaching the Ineffable Massiveness of what sits atop our shoulders and between our ears. I can’t account for the reticence, in general. It’s like everyone is running around talking about everything except their brains… like we’re trying to keep our minds off it.

Or maybe it’s just so close to home that it makes people waaaaay too nervous to approach, and anyway, we’re taught that unless we have degrees and qualifications, who are we to discuss such weighty matters? It puzzles me. We all have brains. We all love to obsess about ourselves and our human conditions. Yet we’ll invest countless hours in dissecting the life choices of Octomom, while remaining oblivious to the Real Drama that takes place inside our skulls, each moment of every day.

I can’t account for it. But it’s getting late, I need to rest, and there will be more time tomorrow to ponder these imponderables. And read the words of  George Prigatano.

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to http://www.givebackorlando.com/, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

  • they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
  • they attracted attention from people who didn’t like what they had to say, who made them take it all down
  • they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
  • they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
  • the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
  • they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
  • some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.

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 😉