Bringing light

Light is where you find it – find more art like this at http://www.atagar.com/bobsGallery/

I’ve been thinking a lot about this holiday season – and all the ways that it’s associated with light. Most of the “big” traditions I know about feature light of some kind, and no wonder — this time of year is when the days become longer, and we literally can celebrate the return of the light. It’s a physiological thing, as well as a psychological and spiritual thing. And it’s well worth celebrating.

I celebrated yesterday by walking deeper in the woods than I have in a long time. Once upon a time, when I first moved to this place, I was out in the woods for most of my waking hours every weekend, rain or shine, good weather or bad. I guess I’ve always been drawn to the forest — it was the one place I felt at home when I was a kid, and there’s something really calming about being in the woods. When I was younger, I wanted to be a forest ranger, until my guidance counselor talked me out of it because it wasn’t “practical”.

Hm.

Anyway, now I get to be my own forest ranger, and I don’t have to worry about government funding cutting me off from my livelihood, so it’s not all bad, the way it turned out. And yesterday I got a good reminder of the things that matter most to me in my life — clean air, fresh water, room to roam, and friendly, like-minded people also sharing the paths.

And I couldn’t help but think about how — for years after my concussion/TBI in 2004 — I couldn’t go into the woods. I just couldn’t. There was too much stimuli there for me. It was either too bright or too dark, or it was too quiet or it was too loud. I got tired so quickly, and when I did, I got confused and anxious. And the idea of interacting with anyone I came across on the paths, was out of the question. I panicked anytime I had to interact with someone who was out for a nice quiet hike like myself. I also got turned around and lost very easily, and since I have never had the best sense of direction to begin with, I would spend hours just trying to find my way back to where I wanted to go. I told myself I was “exploring” but the fact was, I was getting lost and had to keep walking to find my way back.

And half the time, I couldn’t remember where I’d come from. Even reading maps was impossible for me. Especially reading maps.

So, I quit going into the woods. I gave up my forest. And things were very dark and dreary for a number of years. The crazy part was, I told myself it was by choice, not something I was stuck doing, because I was so trapped in anxiety and sensory overwhelm.

What changed it? I think just living my life. Working with my neuropsychologist to just talk through my daily experience. Also, doing my breathing exercises — and exercising, period. And practicing, practicing, practicing some more at the things I wanted to do, until I could do them pretty close to how I wanted to. And learning to not be so hard on myself for being different now than I was before.

I also really paid attention to the times when I saw signs of more functionality — like when I started going on hikes again, after years away from them. Like when I was able to read an entire book, after years of only being able to read short papers — and not understand much of them at all. Like when I gave things my best shot, and found them turning out pretty darned close to how I intended — sometimes even better.

Taking the edge off my anxiety, giving myself a break, focusing on things that were bigger and more significant than my own petty concerns… those helped. Those brought light to my life.

And it continues to get better.

When I think back on how I was, just five years ago, it amazes me. I was so trapped in a dark place, confused and not knowing what was wrong with me. I didn’t understand what was holding me back, I didn’t understand what was stopping me from just living my life. I didn’t understand how confused I was or what I was confused about. I couldn’t discern the different issues I had, because it was all just a dark blob of problems that pulsed like a nebula of hurt and pain and confusion. When I think about how things are now — with so much light and so much more possibility… it amazes me.

There are answers out there, if we look… if we know to ask. There are solutions out there, if we take the time to be clear about what the issues truly are. There is hope out there, when we are willing to take a chance, have some courage, and move on — move on.

As the days lengthen and we roll towards the spring (I know, winter is just now beginning, officially)… as we take this holiday season to step away from the everyday grind and do something different with ourselves… as we try to imagine what else is out there for us… let’s all remember that as dark as it gets sometimes, the night does pass. There is always dawn and a new day, just around the corner.

Yes, let there be light.

Crossing the river(s) when the bridge is washed out

I’ve been thinking a lot about how my brain developed over the course of my life, wondering if/how my early mtbi’s affected me.

I have to say, it’s a bit confounding. It’s hard to see where the differences between me and everybody else are just regular personality differences, and which ones could be related to my falls and accidents and the assault when I was eight. I’ve actually remembered more incidents, over the past few months, most notably an incident when I was in daycare as (I believe) a 4-year-old.

I don’t remember much — just climbing up some stairs when some of the older kids encouraged me to come play… then running and jumping a lot… and then lying on the ground, looking up at an older kid looking down at me… and one of the other kids running downstairs to tell the lady who watched us all that something was wrong… the lady coming at me, looming over me, checking me over… yelling at the big kids… lots and lots of yelling. I’m not sure if my parents ever found out that something happened, but I remember trying to get upstairs a few more times, but the lady who ran the place wouldn’t let me, which really made me mad! It was fun playing with the big kids. I didn’t want to be stuck downstairs with the “little peepies”. I wanted to run around and play with the big kids.

I think that I may have been kept downstairs because I was small for my age. A couple of my younger siblings were actually bigger than me, till I was about 12 years old and I started to grow. I was a little kid, so I think the lady who kept me probably told me to stay downstairs so I would be safe.

Clearly, that didn’t work. If memory serves — and there’s the distinct possibility that it doesn’t. At least, in this case. I was reading a book, lately, about how the brain doesn’t always store the information it’s exposed to. It’s not like a tape recorder or digicam. It doesn’t just take in everything it’s shown. And sometimes it “records” things that never happened. So, I could be wrong about this — yet more fiction about my life…

But I’ve felt for a long, long time that something bad happened to me when I was little — in day care — and I always had this faint memory lurking in the back of my mind. It’s always just been there, I just never paid any attention to it. But then, the other week, all of a sudden, I got this big Wham! of a hit of the sequence of events. Like all of a sudden, they “clicked” with me, and I could see it all happening in front of me, like it was yesterday.

Hmmmm…

I also remember falling down the stairs more than once when I was a kid — one time in particular, I went down and slid the whole way down the carpeted stairs, banging my head on them, one at a time. Similar to my fall in 2004, which anniversary is coming up soon, but when I was little, I hit just about all the stairs on my way down. I can still remember the feeling of my head bouncing off the stairs — bang-bang-bang-bang-bang-bang-bang-bang-bang-bang — and the dull fog that enveloped me when I got to the bottom.

Man, oh, man…

Well, anyway, I know that I have a long history of head traumas — plenty of them subconcussive, as I was a very rambunctious kid with a lot of energy but not quite as much balance… I was always biting off more than I could chew, energy and coordination-wise. So, I fell down a lot, hit my head a lot, ran into things a lot. I got banged up, bounced back up, and got back in the game. I was game. Totally. Always up for more. Just try and hold me back…

Sometimes, people were able to, like the lady who watched me when I was little. But most of the time, they weren’t.

I showed them. I could do it. I’d be up and at ‘em in no time. Sure! I could do it!

Now, I’m dealing with the after-effects of my (sub)concussive childhood. And I’m wondering if the impacts over the years had a lot to do with how my brain developed. I have to say, although I have some complaints (who doesn’t, tho?) I’m pretty pleased with how flexible my thinking is, and how well I can perform, by and large. I tested very high in my neuropsych evaluation – high 90’s, percentile-wise. In my moments of self-satisfaction, I imagine I’m a genius or a savant of some kind. (Ha – yeah, right – when I figure out how to keep my study clean and get stuff done when I’m supposed to and make it to the train on time, then I’ll qualify). I have to say, though, I don’t have that many of those kinds of self-satisfied, self-congratulatory moments (I should be so lucky), so I try to savor the ones I have.

But anyway, back to the washed out bridge thing. I’ve heard head injury described as a shearing of fragile connections in the brain — the fine connectors get disconnected, sheared, frayed, and generally disrupted. Kind of like the frayed strings in my sweatpants when I was a kid and I wore my sweats to shreds. And the routes that normally connect the different parts of the brain end up having to re-route to find other ways to connect. And that’s where the fatigue comes from. And the constant restlessness. And the agitation. The brain has to work all the harder to do basic, regular stuff. It can do it, it just takes more effort. The ways that are usually used, the pathways that everybody else seems to have intact, don’t quite work the same for us.

So, we mtbi survivors have to find other ways to get down the neural pathways of our lives. We have to find other routes, when the highways and byways of our brains are washed out by the storms that take us by surprise. The traffic of our brains doesn’t stop — not as long as there is life in us. It just keeps coming and coming and going and going, and when it comes to a place in the road where a bridge used to be, or a paved portion is mising from a huge-ass virtual sinkhole that opened up under it, or there’s a huge fallen tree getting in the way, we — the traffic in our brains — have to find a different way of getting where we need to go.

And I think about all the times when I was a kid, feeling like I was so far behind, just struggling to keep up with what was going on around me, hassling and hassling and hassling over every little detail… all the while seeming to be fine, because I learned pretty early on to be stoic and not let on when I was having trouble — and anyway, I was a tough little kid who didn’t take shit from anyone — and I think about my brain and how hard it was working to put two and two together…

Man, I have to hand it to myself for not going crazy. Granted, I was a strange kid who went off on horrible tantrums, beat up on my siblings, and had all sorts of weird habits, like rubbing through the satin edge of my blanket because the feel of the satin between my fingers was the only thing that would calm me down enough at night to get to sleep… I won’t go into the hiding in dark corners and talking to myself for hours on end and tearing out clumps of my hair — that’s a tale for another time. But all that disturbance aside, I actually came out okay. And nobody I know seems to have noticed there was something really amiss with me.

Of course they didn’t. I learned a long time ago, to hide what goes in with me. In fact, it wasn’t until I realized I was several hundred thousand dollars poorer than I’d been three years before, and I couldn’t explain to myself exactly why or how or when that had happened, that I noticed there was something amiss with me.

Crazy.

Anyway, something must have worked, because here I am, relatively normal, as far as anyone else can tell, testing well, for the most part, in my evaluations, and able to hold down a job and advance my career. Maybe I’m just fooling myself and I’m in for a rude awakening, when I find out that I’m not nearly as competent as everyone else seems to think I am. Maybe I’ll crash and burn. Maybe I’ll self-destruct. I don’t plan to, and I don’t think I will, but you never know.

All I know is, all these years, whether because I’ve kept busy or just kept moving, I’ve been able to re-route my brain around lots of obstacles, and find other ways of getting where I need to go. I may have had all those falls and all those injuries, but if anyone is a testament to neuroplasticity, I am. I’m serious. All the crap that’s gone down in my life, and miraculously my brain has managed to adapt, grow, change, and not show up horribly deformed on my MRI or register more than slight abnormalities on my EEG. For all I’ve been through, for all the crap that’s been done to me, and the wrecks I’ve survived, I’m doing okay.

Even if the bridge is washed out in places, there’s plenty of territory to discover while I’m bushwhacking my way through the underbrush. And if I’ve learned anything from this life, it’s that if you just keep going and use your good sense and you don’t go out of your way to do genuinely stupid stuff, you can find your way back to a beaten path of some kind. It might not be the road you left, and it might not be the road you were looking for. But sometimes a detour is the best thing for us.

Just keep going.

Journaling for TBI Recovery

I’ve been really thinking a lot about the two articles I read lately — the first Offensive Play – Football, dogfighting, and brain damage, by Malcom Gladwell in the New Yorker, and the second The Magnificent Minnesota Nun Brains by Ken Korczak.

They are both really good reads, and I also plan to read Aging with Grace by David Snowdon, which talks in greater detail about the Nun Study and what they learned about how you keep your brain and cognition intact, even in the face of considerable damage.

A bunch of things can be done — living a structured life with like-minded people, keeping a positive attitude, not fretting over material things, tending to your spiritual well-being, and (perhaps most significant to me, these days) keeping a daily journal where you mindfully and deliberately keep track of your daily life and critique yourself to improve where you can.

This matters tremendously to me, because after reading the Malcom Gladwell piece, I got to thinking about my childhood, how rough-and-tumble it was, how many times I got hit on the head in the course of playing, and how many times I was dizzy or woozy or out of it, after falling or colliding with something/someone.

Excerpted from the Gladwell piece:

But what sidelined the U.N.C. player, the first time around, was an accidental and seemingly innocuous elbow, and none of the blows he suffered that day would have been flagged by a referee as illegal. Most important, though, is what Guskiewicz found when he reviewed all the data for the lineman on that first day in training camp. He didn’t just suffer those four big blows. He was hit in the head thirty-one times that day. What seems to have caused his concussion, in other words, was his cumulative exposure. And why was the second concussion—in the game at Utah—so much more serious than the first? It’s not because that hit to the side of the head was especially dramatic; it was that it came after the 76-g blow in warmup, which, in turn, followed the concussion in August, which was itself the consequence of the thirty prior hits that day, and the hits the day before that, and the day before that, and on and on, perhaps back to his high-school playing days.

This is a crucial point. Much of the attention in the football world, in the past few years, has been on concussions—on diagnosing, managing, and preventing them—and on figuring out how many concussions a player can have before he should call it quits. But a football player’s real issue isn’t simply with repetitive concussive trauma. It is, as the concussion specialist Robert Cantu argues, with repetitive subconcussive trauma. It’s not just the handful of big hits that matter. It’s lots of little hits, too.

That’s why, Cantu says, so many of the ex-players who have been given a diagnosis of C.T.E. were linemen: line play lends itself to lots of little hits. The HITS data suggest that, in an average football season, a lineman could get struck in the head a thousand times, which means that a ten-year N.F.L. veteran, when you bring in his college and high-school playing days, could well have been hit in the head eighteen thousand times: that’s thousands of jarring blows that shake the brain from front to back and side to side, stretching and weakening and tearing the connections among nerve cells, and making the brain increasingly vulnerable to long-term damage. People with C.T.E., Cantu says, “aren’t necessarily people with a high, recognized concussion history. But they are individuals who collided heads on every play—repetitively doing this, year after year, under levels that were tolerable for them to continue to play.”

The bold parts are the ones that apply to me especially. Because in the course of my life I have had a ton of little hits. Too many to count, really. All those ballgames, the football, the lacrosse, the baseball, the soccer… all those times when I got clocked or had my bell rung or just plain fell and smacked my head… even the times when I didn’t smack my head, but had my head snap back as a result of a fall or a hit or a collision… It’s crazy, thinking back, and I can see how all those impacts of my childhood could easily have added up to a weakened network of connections, which made me more susceptible to more serious effects, long after I quit playing rough sports.

Perhaps my history of impacts explains why I could be in relatively minor car accidents, but be so tremendously impacted by them — unable to understand what people were saying to me, unable to initiate conversations with the police (that would have cleared my record of inaccurate info that the cops entered on the report, in order to cut the guy in the other car a break) and thus  kept my insurance costs lower — unable to function adequately in my jobs after the accidents, so that I literally had to leave and find other pastures.

Maybe that’s why one of the accidents I was in affected me so profoundly, but it didn’t affect the other person who was in the car with me. If my neural connections had  been compromised over the course of 18 years of rough play and impacts, while the other person in the car led a relatively sheltered life that was not as sports-oriented (while I was out on the field, slamming into people and things in various games, they were sitting on the sidelines, playing the flute in the band), it would make sense that the effect of double impacts — front-end and rear-end collisions — would be greater with me.

Of course, there are a ton of different variables, but if repeated exposure to head impacts plays a role, then it makes sense that I’d be more susceptible than I ever guessed I was.

Anyway, everybody’s brain is different, and I understand that self-diagnosing and trying to explain my own situation from inside my addled head can introduce problems with logic and deduction, so I could be wrong about it. I don’t think I am, but I’ve been wrong plenty of times before. The main thing I’m concerned with, these days, is how to avoid the kinds of problems other people with repeated head trauma have encountered, namely, the dementia and cognitive degeneration that can develop over time. Like everyone (who is lucky enough to be alive), I am getting older, and like many folks, I’m concerned about cognitive decline.

So, my thoughts turn to the Mankato, MN nuns, the School Sisters of Notre Dame. I think about this bit of info, in particular:

Amazingly, some of the nuns maintained clear healthy minds even though their brains showed the scars and deterioration characteristic of severe brain diseases, such as Alzheimer’s and strokes.

In the case of the brain of one Sister Mary, who died well into her 100s, scientists were astounded to find large-scale deterioration of brain tissue, and even lesions associated with strokes and progressive Alzheimer’s Disease — yet she remained clear-headed and lucid to the end of her life.

Sister Mary’s brain apparently defeated the effects of these brain diseases by countering them with an unusually rich growth of interconnection between her brain cells, or neurons. Her extra dendrites and axons were able to bypass damaged areas of her brain to keep her lucid and healthy.

I need to do what Sister Mary did. Okay, I’m not a nun, and believe you me, there is no way I’d qualify to join them, even if I wanted to. Fundamental human differences (like anatomy and philosophy) preclude that. But if Sister Mary could manage to remain clear-headed and lucid despite large-scale deterioration of her brain tissue — including strokes and Alzheimer’s — then heck, why can’t I?

Seriously — the nuns are human, and I’m human. Perhaps Sister Mary didn’t grow up climbing and jumping and falling and fighting and tackling and being tackled, but if she was able to keep her act together despite some seriously damaging conditions, then why can’t I?

I may have led the kind of life that’s laid the groundwork for some serious cognitive degeneration as I continue to age, but by God, if there’s a way I can avoid going down the long dark tunnel to diaper-clad dementia and the total loss of everything I hold dear that makes me actually human, then I’m all in.

So, here’s my plan:

  • Stay positive (no matter what) – no matter how dismal things may seem, life has a funny way of turning around, sometime or another.
  • Introduce structure and order to my life – make sure I plan my days, and then stick with the plan (like they tell me in the Give Back Orlando material)
  • Cultivate more discipline to maintain that structure – because the stuff won’t get done by just listing it on a page
  • Do what I can to surround myself with like-minded people – friends are important, and I haven’t done enough over the years to cultivate those connections. I know this should change, and so I’ll do that.
  • Journal, journal, and journal some more – It worked for Jefferson, Edision, Faraday, Isaac Newton, and Einstein, and it can work for me.

The great thing about journaling, from where I’m sitting, is that it enables me to do all of the above items. It lets me work on my attitude, tweak my outlook, and get in touch with what is holding me back. It helps me introduce structure to my life, not only by committing to do it daily, but also by journaling in a way that is as much planning as it is reflection. I can use my journal to track my progress and develop my discipline — in ways that are appropriate to me. And it can help me work through the things that keep me from others. In my journal, I have a safe place where I can uncork at will, and no one is harmed. Too often, I have just said what I felt to people who either could not hear it, or who didn’t deserve to bear the brunt of my intensity. Using a journal lets me say what I need to say and vent, without the danger of harming others. That’s important. Especially for me. My past is littered not only with subconcussive head traumas, but also with tons of relationships that could not withstand the pressure of my outbursts and lack of control.

So, onward and upward. I have access to information about people who managed to overcome some pretty serious threats to their sanity and cognitive health. I have access to accounts of their lives and scientific investigations into what worked for them. I can avail myself of their teachings and lessons and use them to my benefit — so that I can live out my days in good health and soundness of mind. I have a plan, and I’m determined to stick with it.

All good.

Does blogging make me brilliant?

It’s quite possible…

I’ve been giving a lot of thought to what can be done to help myself not end up like football players described in Malcom Gladwell’s New Yorker piece on Football, Dog Fighting and Brain Damage. I must admit, it wasn’t the best idea to read that story before going to bed last night. It kept me up, actually, which wasn’t good.

Anyway, it’s Saturday, so I can always sleep later to make up the time. And there’s something about drifting in that in-between place, that gets my mind turning in different directions for the answers it craves.

A few years ago, I heard about The Nun Study (by the Universities of Minnesota and Kentucky) which followed an order of nuns in Mankato, MN, who lived longer — and better — than was typical of the average population. They found some interesting things in their study — including the fact that some of the sisters’ brains (after they had passed on and their brains were donated and studied) were chock full of signs of Alzheimers. Yet, they had exhibited none of the symptoms we associate with the degenerative disorder.

In The Magnificent Minnesota Nun Brains Ken Korczak writes:

Most of the Sisters of Notre Dame stay vital and active well into their 90s. There are almost no symptoms that are typical of age-related brain disorders, such as senile dementia, strokes and Alzheimer’s Disease.

Amazingly, some of the nuns maintained clear healthy minds even though their brains showed the scars and deterioration characteristic of severe brain diseases, such as Alzheimer’s and strokes.

In the case of the brain of one Sister Mary, who died well into her 100s, scientists were astounded to find large-scale deterioration of brain tissue, and even lesions associated with strokes and progressive Alzheimer’s Disease — yet she remained clear-headed and lucid to the end of her life.

Sister Mary’s brain apparently defeated the effects of these brain diseases by countering them with an unusually rich growth of interconnection between her brain cells, or neurons. Her extra dendrites and axons were able to bypass damaged areas of her brain to keep her lucid and healthy.

. . .

After examining and dissecting dozens of brains, scientists have come to several conclusions. Interestingly, the secret to the long lives and clear minds of these nuns may be attributed to a couple of simple things.

After looking at dozens of different variables, researchers discovered that the Sisters of Nortre Dame all did one thing that the majority other people do not do — they kept a daily personal journal recording their deepest thoughts, emotions, impressions and ideas.

Also, the Sisters Of Nortre Dame condemn “mental idleness” as sin. They did not allow themselves the frills of mental down time. Most of the Sisters have college degrees and some graduate degrees. They also play a lot of brain teaser games, solve puzzles and engage in rigorous debates at weekly seminars.

Keeping a rigorous daily journal is also required by the Order, and is considered as important as daily prayer, work and devotion to their primary vocation, the education of children. The Sisters believe in thorough, critical self examination.

The journaling aspect of the nuns intrigued scientists so much, some went looking for independent confirmation that daily journaling or diary keeping may be the secret to defeating the brain diseases of old age, and longer life.

Well, they not only found confirmation, but some scientists determined that frequent journaling may be a sure way to raise the IQ of any person, and may even springboard some people to genius level.

. . . (more here)

… researchers pointed to many other facets of their lives which may have contributed to their longevity:

• They belonged to a religious order and prayed daily. Recent independent studies have suggested that people who go to church or belong to any kind of religion, tend to live longer and be happier than those who do not.

• They felt comfortable in the fact that they “belonged” to a supportive group of like-minded human beings. This longevity factor has also been noticed in independent studies on peoples in Japan, Pakistan and Crete.

• They stay physically active as well as mentally active, not slowing down when reaching ages 70s through 100s.

• They actively cultivated positive attitudes.

• They lead selfless lives, and devote themselves to caring and giving to others.

• They rarely worried or fretted over material things such as money, mortgages, taxes and the like.

• They accept death as being a part of life. Funerals for the nuns are said to be almost occasions for joy among the Sisters.

Most of the above, I can relate to. I tend to substitute “spirituality” for religion, but the concept of being part of an organized, regularly scheduled spiritual practice strikes me as being very beneficial. And different people have different definitions of religion and spirituality, so I would imagine that avid readers who are passionate and disciplined about their reading could substitute weekly book club meetings for church. I don’t mean to be sacreligious. Different people just relate spiritually to different things, so those of us who are not regular church-goers shouldn’t be condemned to dementia by association.

Also the journaling aspect of things really caught my attention. Over the course of my life, I’ve kept journals regularly, even when they were full of gibberish and meant nothing to me later on. The simple fact of writing — in longhand — my thoughts and impressions and hopes and dreams and fears and frustrations, may have helped me overcome at least eight distinct head injuries, to the point where my life is unmarked by those injuries to the eyes of the outside world (my inside world is another story). Ultimately, for the sake of my own survival, what the outside world thinks is waaaay important. I can always address my internal issues on my own time and in my own way. But I do need to keep a job.

It’s interesting that I’m coming across this today. A few days back one of my neuropsychs was telling me that keeping voluminous journals is not the best use of time. They would like me to spend my time more fruitfully, making my  mark in the world. Well, sure, I would too, but it’s a good thing to read that keeping a lot of journals is not actually a waste of time.

Now I need to arrive at their office with this article in hand, and hopefully they will revise their opinion. If not, it’s of no consequence to me. I’ll keep writing, regardless.

Interesting — since my fall in 2004 (I’m coming up on my 5-year anniversary of the mild TBI from hell), I have not written much in longhand. It’s like, I just stopped. I told myself I didn’t have any use for my journals, anymore, but the fact was, I was having a hard time writing. I had suddenly become a bit dyslexic, after nearly 40 years of never having that problem. And I was having trouble focusing and concentrating long enough to get words on paper.

Now, it seems, I need to get back to that. Not only because it’s good for my brain, but also because I need to discipline and I need to exercise those parts of myself that are helped by writing in longhand:

  • discipline (the ability to put words together in a meaningful way, as well as keeping myself on topic)
  • impulse control (the ability to slow down and gather myself when I need to)
  • eye-hand coordination (keeping my writing on the lines — or practicing writing on blank paper and keeping my writing in straight lines)
  • focus (keeping my mind on the page in front of me)
  • checking in with myself in a deliberate, measured way

Yes, the more I think about it, the more sense it makes for me to do this. Not so much for the old reasons — before, I thought I was helping myself realize truths about myself, when I was really wandering around in a fog, much of the time — as for the new ones I’ve listed above.

Also, my writing needs to change. It  needs a new focus. Not this old rambling, wandering, free-association stream of thoughts all the time (though sometimes that may be good to do), but a more focused, more deliberate kind of writing that doesn’t take me away from my life, but brings me into the midst of it.

And all the while, I am continuing to blog. Continuing to share what I’m finding. Continuing to reach out and relate what I’ve found to be useful — or not helpful — in this path of recovery, which is as much about just living my life, already, as it is about specifically addressing TBI-related weaknesses and problems. There’s a whole wide world out there, and there’s lots to talk about. Blogging gives me a chance to do it in a way that isn’t as insular and as esoteric as my own private journaling, and with any luck, it does others some good, too.

And if I do it often enough and with enough focus and discipline, it can help me think better and write better, which in turns helps me feel better about myself, focus on solutions rather than the endless stream of problems that follow me around like so many crying, swooping, begging seagulls following a fishing boat. I’m at the wheel of my own fishing boat, and I’m the one at the helm of my life. I can choose to pay attention to the gaggle of hangers-on and let them distract me from my activities, or I can pay attention to my boat and my nets, and haul in whatever catch I can get.

My choice.

Bottom line is, this writing activity of mine is actually a good use of time, and I need to value it. Even though it’s seemed like an exercise in futility (to myself and others), that belief has been based on incomplete information, and those beliefs can change. Beliefs can change, and so can behavior. I can “bump up” the activities I’ve followed “just for fun” — and practice them as regular parts of my active recovery from mild traumatic brain injury. I can use them as opportunities not only to heal from my recent damage, but also to ensure my long-term cognitive health and happiness.

Fact: I have sustained at least 8 (possibly more) mild (and some possibly moderate) traumatic brain injuries throughout the course of my adventurous life.

Fact: Plenty of people get hit on the head or sustain some other sort of brain damage or degeneration, and some of them live long and happy lives, devoid of any signs or symptoms of their hidden issues.

Fact: Some of those asymptomatic survivors do specific things that appear to help them. Studies have shown correlations between certain behaviors and choices and long-term cognitive health.

Fact: Those activities are things I can do, myself. They are not mysterious or beyond my reach. They include activities like faithfully keeping a daily journal, cultivating a positive attitude, and maintaining a disciplined way of life that is devoted to service to others. I can do them, too. In fact, I have been doing many of them for many years, and this may account for my tremendous success as a long-term multiple head injury survivor.

If the simple act of blogging about my own life doesn’t make me brilliant, alone, certainly learning from the blogs of others — and blogging in turn about it for others to read — can’t hurt.

Onward, upward. And outward. The world is waiting…

Brain Is a Co-Conspirator in a Vicious Stress Loop

Great article at the New York Times

If after a few months’ exposure to our David Lynch economy, in which housing markets spontaneously combust, coworkers mysteriously disappear and the stifled moans of dying 401(k) plans can be heard through the floorboards, you have the awful sensation that your body’s stress response has taken on a self-replicating and ultimately self-defeating life of its own, congratulations. You are very perceptive. It has.

As though it weren’t bad enough that chronic stress has been shown to raise blood pressure, stiffen arteries, suppress the immune system, heighten the risk of diabetes, depression and Alzheimer’s disease and make one a very undesirable dinner companion, now researchers have discovered that the sensation of being highly stressed can rewire the brain in ways that promote its sinister persistence.

Reporting earlier this summer in the journal Science, Nuno Sousa of the Life and Health Sciences Research Institute at the University of Minho in Portugal and his colleagues described experiments in which chronically stressed rats lost their elastic rat cunning and instead fell back on familiar routines and rote responses, like compulsively pressing a bar for food pellets they had no intention of eating.

Moreover, the rats’ behavioral perturbations were reflected by a pair of complementary changes in their underlying neural circuitry. On the one hand, regions of the brain associated with executive decision-making and goal-directed behaviors had shriveled, while, conversely, brain sectors linked to habit formation had bloomed.

In other words, the rodents were now cognitively predisposed to keep doing the same things over and over, to run laps in the same dead-ended rat race rather than seek a pipeline to greener sewers. “Behaviors become habitual faster in stressed animals than in the controls, and worse, the stressed animals can’t shift back to goal-directed behaviors when that would be the better approach,” Dr. Sousa said. “I call this a vicious circle.”

Keep reading…

When TBI help is not helping

I’ve been thinking a lot, lately, about how I never got any diagnosis, rehab or therapy help for my MTBI’s (until the past year or so), and how that has affected my life. I’ve been seeing a therapist who is a neuropsychologist, as well as a diagnostic neuropsychologist who has helped me understand a great deal more about how my TBIs have affected not only my brain by the rest of my life, as well. And it’s great to be getting this help — and to be able to talk to friends and family members about my TBIs in ways that are helpful and actually informed.

But I have to wonder if maybe one of the reasons I’ve been able to function as well as I have (in certain ways) is because I’ve gotten next to no “TBI help” from people in my life. Nobody ever recognized (as far as I could tell) that being knocked out, falling down stairs, and/or being hit on the head a bunch of times, could have as big an impact on my cognitive and behavioral expressions as it did. Nobody ever approached me as someone with special needs who needed special attention, and whose needs should be accommodated.

To be clear, I had a lot of problems when I was a kid. The falls and sports concussions and the attack that knocked me out when I was eight appear to have skewed my behavior to the extreme, and I was pretty tough to handle at times. But all through my childhood, difficult as it was, I was never cognizant of having “problems”. I thought it was everyone else who had the problems, not me. I didn’t perceive myself as being different — in part because my parents never treated me like I was different, just difficult… in part because I think my perception was so anosognosic (I had no clue that I had no clue what was going on) that I couldn’t self-assess and self-regulate at all.

Granted, it’s no fun growing up being told that you’re lazy and a bad seed and that you’re just not trying hard enough.  It’s no fun having all the authority figures in your life yell at you, make fun of you, chastise you in public, discipline you, and generally hound you to do things you have a really hard time doing (if you can do them at all). But all the messages from my childhood that I internalized that took a toll on my self-esteem, as an adult, I can nowadays reason my way past them and reverse their impact simply by understanding that they just weren’t true.

Now, if I had grown up with the belief that I was damaged, broken, deficient… and that there was nothing to be done about it, other than compensate and make concessions and get special treatment from the powers that be, I think that might have taken an even greater toll on me. Because it would have been true. Irrefutable. Definitive. Sort of. I could totally see myself falling into this state of resignation over my broken brain and just never having any hope of building a real life for myself. I might have given up and become even more marginal than I was — not because the rest of the world didn’t understand me and my mind was having trouble wrapping itself around its difficulties, but because my spirit would have probably been broken, and I would have ushered myself to the margins and just been glad for what little I could get from life… hiding in the corner and sneaking out when no one was looking to gather crumbs that fell off the proverbial table.

I think, too, never having an explanation for why everything was so damned difficult for me all the time, actually helped me. It didn’t give me a reason to quit trying. All around me, throughout my life, people with expectations were giving up on me. Parents. Teachers. Grandparents. Aunts and uncles. Neighbors. Cousins. Just about anyone who had expectations of me had them dashed in short order. No matter how hard I tried, I just couldn’t seem to get it right. But I didn’t have a reason to stop trying. I was never told, “You’ve been injured — permanently — so why bother?” I was never “reassured” that it was okay to fail. I was encouraged to go easy by some people who lost faith in me, but I never gave up on myself, and I never lost faith that somehow, some way, I would figure out how to get done what I set out to do.

I just wasn’t giving up. I didn’t have any tools given to me, that I can recall, other than try-try-again, and I had to come up with a lot of systems of my own, but I did try-try-again and I did come up with systems. And somehow, some way, I did manage to build a pretty impressive life — and resume — in the process.  It’s been a long, tough row to hoe, and I’ve been knocked down more often than I care to think about, without people offering me a hand up. But you know what? I can bounce. That’s what I do. I bounce. I’m like one of those Weebles. I wobble, but I don’t fall down — permanently. Sure, my self-esteem is for crap, a lot of times, and I automatically disqualify myself from activities I messed up as a kid, which I could probably do now that I’m grown. But I’ve figured out how to keep moving, keep progressing, keep advancing… even in the total, utter absence of self-esteeem.

Surprisingly (compared to what I hear said all the time), you don’t actually require ironclad self-esteem to get stuff done in the world. In some ways, having severe self-doubts and low self-regard can keep you honest and working hard.

Now, I would imagine that TBI folks who receive formal rehab and are given tools to use to get by in life may have a more pronounced sense of ability because they receive guidance and training and rehab therapy that is meant to reassure them that they can do what they set out to do, and is designed to return them to functionality. And when they bump up against the upper limits of their capabilities, it may come as a surprise. I think that would be even more upsetting for me than not realizing you have problems, and encountering problems, time after time. I think that would eventually take a huge toll on my spirit. I would think, I’ve been shown strategies and given tools. Why aren’t they working? What’s wrong with me? Am I really that messed up? Why am I not getting better?

I wouldn’t know exactly what it’s like, because I’ve never had real rehab or occupational/speech therapy. But if I were getting rehab therapy, I would probably be inclined to push the envelope of my abilities, and I’d probably fall flat or run out of steam over and over and over again — and be really pissed off that things got mucked up. I should be rehabbed, right? That’s just me. I don’t know if others experience that, as well, but knowing myself and my tendencies, that’s probably where I’d be.

Another thing that I think might happen with people who get rehab and whose friends and families know about their head injury, is that they get moral support and encouragement from their various relationships, but when they muck up, they get that subtle (and often unarticulated) message that it’s okay for them to be less functional than they’d like to be, ’cause they’re brain-injured. So, they shouldn’t feel so bad about it. And maybe they shouldn’t try so hard… maybe they should just accept themselves as they are and settle into the kind of life that has been given them, rather than the kind of life they want to create.

I notice that happening in my immediate circle, where people close to me who know about my head injuries are trying to be loving and gentle, but they end up.. well, “emasculating” me in the process of my “journey towards wholeness”. I mean, it’s all very well and good for them to care enough about me to reassure me that I’m still a good person who has value, but it’s not helpful for me for them to downplay the importance of trying to do my best. It’s not helpful for me to have expectations lowered, and accept failure as a given. I’m still a work in progress, and there’s no telling how far I can go in life, given the right tools, the right approach, the right form, the right level of effort. But all too often, my circle of supportive friends and family seem to settle for accepting me as I am, which also includes accepting my screw-ups as being okay.

I wish they wouldn’t do that. I’ve got to have a talk with them about what I would like them to do.

For me, so much of doing well in life is not so much about innate ability, as it is about spirit and determination to develop what ability I have into something more. I think that’s something people lose sight of — especially later in life when full-grown adults (like me — I’ve got a birthday coming up, and I’m getting closer to 50 than 40 — when did that happen?) — are starting to wind down a lot of their activities and/or they’re accustomed to working with a set of abilities that they’ve honed over the years, but haven’t really worked at keeping up. And they figure they can just draw on what they’ve accumulated in the past.

For me, no matter how old I am or how much older I’m getting (and I’m damned lucky to be getting older, lest I forget how many close calls I’ve had in the past), I am not in a position where I can just slack off and accept things for what they are. If the rest of the world wants to retire and fade away, I’m not going to stop them. If the rest of my peers are going to quit improving and honing their abilities and making as much as they can of what talents and interests they have, I’m not going to stand in their way. But for me, I have to keep moving, keep improving, keep at it. And I have to not take any of my “innate” abilities for granted.

Doing that is inviting disaster.

That being said, I really think people need to be reminded that none of us has any guarantees in life, and freedom is never free. It’s entirely up to us, what we choose to do with our talents and interests and abilities, as well as our injuries and setbacks. Just because you have experienced an injury does not mean you’re any less able to improve than anyone else. Or that you are entitled to work any less hard. If anything, you have to work harder — but remember, that hard work can really pay off. No, there are no guarantees, and you may end up expending a lot of effort for what seems like a relatively small pay-off, but if you take delight in the discipline of the work itself, and you get something out of just having at it with all your might, then the outcome — while important — does not become the be-all-to-end-all.

And the work itself becomes its own reward… As well as all the perks you get from building your character and inner strength while working your everloving ass off.

But it’s still work. And to do your best, you have to keep your spirits up. And to keep your spirits up, you need to not be constantly reminded that you’re less-than (’cause the doctor said so), or that you’re disabled (because the insurance company said so), or that you’re any less deserving of your place at the table in life. You need pep talks and coaxing of all kinds — gentle as well as matter-of-fact. You need supporters who support the person you can become, not just the person you appear to be at the moment. You need backers who are realistic and optimistic at the same time — not out of some pie-in-the-sky Pollyanna BS, but because they know for a fact that the human experience is a deep, deep mystery full of ups and downs and twists and turns and wrinkles and Burmese tiger traps, but what good is life, if you’re just going to sit on the sidelines and cry boo-hoo?

So, it’s hard. This is news?

Okay, okay… I understand the necessity of grasping limitations, but at some point, if you’re going to have a life, you have to grasp all the harder at the things you have going for you, the things that make you a viable human being, your positive qualities and strengths that enable you to see past your limitations… and even turn them around in your favor. No, I’m not really that pleased that I’m at an age when I “should” be able to settle into a comfortable routine and rest on laurels I started growing 25 years ago. No, I’m not thrilled that when my peers are being promoted into higher and higher positions and paying off their mortgages and starting to have grandchildren, I’m still struggling with the basics, like remembering whether or not I’ve shampooed my hair this morning. I’m not at all giddy about the prospect of having to keep lists of really simple crap I have to do for the rest of my born days, in order to get anything done. I would like to be able to kick back and enjoy myself after all these long, arduous years.

But y’know what? That’s not going to happen. Not if I want to have any kind of a life. And it does me no good to sit around boo-hoo’ing about it.

So, what’s the story I want to tell myself today about my life, to get me in gear and make peace with the hand(s) I’ve been dealt? I think about my ancestors, some of the first pioneers who were “sodbusters” in the Great Plains several generations ago. Okay, I don’t agree with them displacing the Native tribes on that land or tearing up the prairie grass that kept the topsoil from blowing away and ending up in the Mississippi, but there’s a quality to their experience and their characters that I need to access for my own purposes.

I come from pioneering stock. The hunger for the frontier is in my bones. My great-great grandparents didn’t cry and moan about having to trek to the outhouse in -40 degree weather and thigh-deep snow to relieve themselves, and they didn’t whine about having to clean up with rough corncobs and Sears catalogs. That’s just how it was. It was the price they paid for the chance to live on the frontier and make their mark and be free to do as they pleased.

They didn’t fuss and fret about tending to wounds without a doctor nearby. They didn’t wallow in self-pity when the grasshoppers devoured their whole harvest. They didn’t freak out when life didn’t work out the way they wanted. They buckled down and did something about it. Or they accepted what was, and they worked at dealing better with it all next time.

In this age of junk food, convenience stores, cheap furniture, easy access to worlds of information, trained professionals whose services are paid for by insurance, and more and more tools to figure out how to live your life, it can be all too easy to forget the element of struggle that life can bring with it. And the harsh reminders can be hard to take. But in the end, life lived thoroughly is often a tough, tough thing to handle, and not everyone is up to the job of urging us onto the high, perilous road that leads to True Success.

Whether they’re professionally trained or in our innermost intimate circles, the people who are trying to help us  might be doing us the biggest favor by not letting us fail gracefully, by not reminding us that we’re diminished, by not accepting our shortcomings as a matter of fact. It might be hard for them to be hard on us, and it might be hard for us to hear what they have to say, but sometimes you just have to bite down on that piece of rawhide, take a long slug of whiskey, and do your best to hold still while your buddy digs that piece of lead out of your arm, cleans it with that stinging sour mash, and ties it up so you can both ride on.

So, I have to work… harder

I’m doing myself a favor, today, and doing some job-related work. I am usually working on something or another, and today (while I do other things), I’m running some programs on my work computer, so I have less to do tomorrow. And I don’t feel so far behind.

I have been falling behind at work. I don’t like it, and it’s not making me happy. So, I’m doing something about it. Ironically, what I’m doing is the exact opposite of what others are encouraging me to do — take it easy, don’t do too much, take time off for myself, etc. They don’t want me to get too fatigued. They don’t want me to get in over my head. And they certainly don’t want me to work if I’m not getting paid to do it.

The thing is, not working is worse for me than working. Because I’m feeling the pressure of unfinished work, and it’s messing with my head. And I also hate being so far behind. It’s actually harder for me, if I don’t do the work in advance of the week.

Also — and this is key — because I need to take more frequent breaks, and because I tend to get turned around, I can’t really do the old 9-to-5 work schedule of yore. It’s just not enough time. I need to break up my days into chunks of work and chunks of rest, so at the end of the day, my 9-to-5 work day actually holds only about 6-1/2 hours of productivity. It has to be that way, or I get completely overwhelmed and then I’m really behind.

So, I just extend the work I do, and I break it into smaller chunks. I look at the list of things I need to do, and I break them down into smaller, more manageable pieces, and then I do them bit by bit, in my ‘off’ hours.

This makes folks in my household a bit nervous, as they think that I’m a workaholic and “all I ever do is work!” But it’s not true — I’m breaking down all the things I have to do, to remain a viable employee into bite-size chunks that are not difficult to do at all. And when they’re that small — for example, like looking over a piece of code or reviewing some document or previewing some features I’m supposed to add to a program I’m writing — they’re actually enjoyable. And I feel good getting them done.

I have progress to report on Monday morning, and that makes me feel really good about myself.

It also doesn’t exhaust me, like trying to cram everything into my 9-to-5 schedule does. That’s just too taxing. I’d much rather spread it all out, take my time, and be able to enjoy myself while I’m doing it.

Now, if I can just get my family and my therapist and all the folks around me who want me to “take it easy” to understand this and get off my back. What’s worse — extending my “work day” a little bit and actually getting some stuff done and keeping my job… or “taking it easy” in the name of coddling myself, falling behind, and making me a liability to my employer/group?

That’s literally the choice I have. I choose the former. I have to.

Thinking about my developing coping mechanisms, I must say that I’m none too impressed by the people who advocate slacking off and limiting my activities, for the sake of my well-being. Maybe it’s because my MTBIs are in the past, and I’ve developed coping mechanisms to deal with them, as well as healed up from a lot of my most immediate issues. Maybe it’s because people don’t understand the nature of mild traumatic brain injury and they just assume that once you’re brain injured,  you’re permanently and irreversibly screwed. Maybe it’s because that’s how they would deal with things. Maybe it’s all of the above. But if one more person tells me, “Oh, you need to just relax and take time for yourself,” I think my head is going to explode.

Let me set the record straight — I have a tremendous amount of energy, and I need to use it. When it’s not properly directed, through productive activity and/or exercise, I become very difficult to live with, at times dangerously so, and I don’t feel good about myself. I feel like a failure, and I have the diminished productivity to substantiate it. I need to keep moving. I need to be active. I don’t respond well to languishing for long hours. I just don’t. I’ve got what my neuropsych calls “constant inner restlessness” that propels me forward, and if I try to stop it, I’m just screwed.

For me, being active and doing things that challenge and entertain me and produce some tangible result is taking care of myself. It is relaxing. Yes, fatigue can be a problem for me, but when I break up all my activities and go about them in a piecemeal fashion, I can fit naps in between times.

There’s not much in-between gray area for me — I’m either all-on, or all-off, and I’m sick of fighting it, just because other people aren’t that way. Let them walk a mile in my shoes, then decide if I should live my life like them. I’ve been thinking long and hard about the directions I need to take with my life and my work, and what I come back to, time and again, is that I just have to work harder now. Because I’m not willing to give up on the kind of work I do, I’m not willing to part with the learning and the doing and the tangible results I get from my type of work, but I can’t keep going about it the old way — as in, just working during the appointed hours. I have to work smarter and harder. And I need to do it with joy and intention and simply refuse to give up. I may need to make some changes to my approaches — focusing more on machine-oriented work, rather than people interactions… getting away from startups and enterpreneurial situations and gravitating more towards big, established  companies…. But I’m not giving up on my software engineering or technology. It just has too much to offer me.

I understand that my brain has been changed by multiple injuries. It may have developed “wrong” from a very early age. But by God, I just can’t bring myself to throw in the towel, “adjust down” my expectations about what is possible for me. I can’t live a marginal life, sheltering myself from possible difficulty. I need to be out there, engaged in my own life, making my own way in the world. There are lots of people out there who are a lot less smart than me, who are doing okay. There are lots of people out there who have less acumen, less social ability, less determination, and they’re doing their thing.

Why shouldn’t I? As much as I’d like to play it safe and keep to myself in my corner, I realize that this is not true safety at all. If I have to learn by trial and error (which I always do – and there are plenty of trials and more errors than I care to think about), then so be it.

So I fall… But I also bounce.

Now, back to work!

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.