Building my cognitive-behavioral exoskeleton

MTBI can do a lot of damage, in terms of shredding your existing skills and long-accustomed habits. It can really undermine your thinking and judgment, so that you never even realize you need to do things differently than you did before. And it requires that you force your brain (and sometimes body) to push harder and harder, even when every indication around (and inside) you is saying, “Let up… let up…”

This can be very confounding. I encounter — all the time — people who are keen on “taking it easy” and doing things “with ease and grace”. They think this is a sign of superior evolution. They think this is a sign of superior character, as though it means they are more “plugged in with the Universe”. They don’t want to have to expend the effort to get things done. They want Spirit/YHWH/God/Creator to do it for them. They don’t want to take a chance and extend themselves, because they are convinced that a Higher Power is more capable than they, and they believe they should just “get out of the way” and let that Higher Power take charge of their lives.

That may be fine for them, but that mindset drives me nuts. First of all, it absolves them of any responsibility for their actions. If things mess up, they can say it was “God’s will” or part of a “higher plan”. If things get really messed up, they can say they just need to be more “in tune with Spirit”.  I have a bunch of friends who are convinced that they are “channels” for Divine Inspiration, and that’s how they should live… just floating along on a tide of holy impulse. And their lives are a shambles. Objectively speaking, they are constantly marinating in a brine of their individual dramas and traumas. It’s just one thing after another, and all the while, they keep expecting Spirit/YHWH/God/Creator to fix all the messes they’ve helped create.

It’s very frustrating to watch this willful disregard of basic cause and effect, but I suppose everybody’s got their stuff.

Now, it’s one thing, if these people (some of whom are very dear to me) are content to live their lives that way, but when they expect me to do the same — and they judge me as being less “evolved” if I do things differently — it’s a little too much to take, sometimes. I don’t do well with living my life from a distance. I don’t do well with telling myself that I’m just floating along on the divine breeze, waiting for some wonderful opportunity to arise to save me from my own creations. I need to be involved in my own life. I need to be invested. I need to put some effort into my life. I need the exertion. It’s good for my spirit. It’s good for my morale. And it bolsters my self-esteem, as well.

Anyway, even if I wanted to just float along, I couldn’t. I’d sink like a rock. I’m not being hard on myself — this is my observation from years of experience. I can’t just ramble about, taking things as they come. I need structure and discipline to keep on track, to keep out of trouble, to keep my head on straight. I can’t just be open to inspiration and follow whatever impulse comes to mind. My mind is full of countless impulses, every hour of every day, and if I followed each and every one, I’d be so far out in left field, I’d never find my way back. I have had sufficient damage done to the fragile connections in my cerebral matter, that the routes that neural information takes have been permanently re-routed into the darkest woods and jungles of my brain. All those injuries over the years didn’t just wash out a few bridges — they blew them up. And they slashed and burned the jungle all around, and dug huge trenches across the neural byways I “should” be able to access.

As my diagnostic neuropsych says, “I am not neurologically intact.”

So that kind of disqualifies me for just winging it in my life. I tried for years to “go with the flow”, and I ended up flit-flitting about like a dried oak leaf on the wild October wind. I got nowhere. I can’t live like that, and I know it for sure, now that I’m intentionally trying to get myself in some kind of order. My brain is different. It has been formed differently than others. It has been formed differently than it was supposed to.

I can’t change that. But I can change how I do things. I can change how I think about things. I can change by facing up to basic facts. As in:

  • My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.
  • If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.
  • It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.
  • My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

On bad days, it’s pretty easy for me to get down on myself. I feel broken and damaged and useless, some days — usually when I’m overtired and haven’t been taking care of myself. But on good days, I can see past all that wretchedness and just get on with it.

Part of my getting on with it is thinking about how we MTBI survivors can compensate for our difficulties… how we create and use tools to get ourselves back on track — and stay there. There are lots of people who have this kind of injury, and some of them/us figure out what tools work best for us, and we make a point of using them. These exterior tools act as supports (or substitutes) for our weakened internal systems. We use planners and notebooks and stickie notes. We use self-assessment forms and how-to books and motivational materials. We use prayer and reflection ane meditation and journaling. We use exercise and brain games. We use crossword puzzles and little daily challenges we come up with by ourselves.

Some of us — and I’m one such person — use our lives as our rehab. Not all of us can afford rehab (in terms of time or money), and not all of us can even get access to it (seeing as our injuries tend to be subtle and the folks who actually know what to do about them are few and far between). But we have one thing we can use to learn and live and learn some more — life. The school of hard knocks.

I use everything I encounter to further my recovery. I have to. I don’t want to be homeless. I don’t want to be stuck in underemployment. I don’t want to fade away to nothing. And that’s what could easily happen, if I let up. My friends who are into “ease and grace” don’t get this. But then, they’re embroiled in their own dramas, so they don’t really see what’s going on with me. Even my therapist encourages me to “take it easy” a lot more than I’m comfortable doing. (They’ve only known me for about seven months, so they don’t have a full appreciation of all the crap I have to deal with, so I’ll cut them a break.)

It stands to reason that others can’t tell what difficulties I have. After all, I’ve made it my personal mission to not let my injuries A) show to others, B) impact my ability to function in the present, and C) hold me back from my dreams. I may be unrealistic, and I may be just dreaming, but I’m going to hold to that, no matter what. I can’t let this stop me. None of it – the series of falls, the car accidents, the sports concussions, the attack… None of it is going to stop me, if I have anything to say about it. I just have to keep at it, till I find a way to work through/past/around my issues.

And to do that, I use tools. I keep notes. I write in my journal. I blog. I have even been able to read with comprehension for extended periods, lately, which was beyond my reach for a number of years. I keep lists of things I need to do. I come up with ways of jogging my memory. I play games that improve my thinking. I focus on doing good work, and doing well at the good work I’m involved in. I bring a tremendous amount of mindfulness to the things I care about, and I’m constantly looking for ways to improve. To someone with less restlessness and less nervous energy, it would be an exhausting prospect to life this way. But I have a seemingly endless stream of energy that emanates from a simmering sense of panic, and a constantly restless mind, so  I have to do something with it.

Some might recommend medication to take the edge off. But that, dear reader, would probably land me in hot water. Without my edge, I fade away to a blob of ineffectual whatever-ness.

I build myself tools. I use spreadsheets to track my progress. I downloaded the (free and incredibly helpful) Getting Things Done Wiki and installed it on my laptop to track my projects and make sure I don’t forget what I’m supposed to be working on. I have even built myself a little daily activity tracking tool that I use to see if any of my issues are getting in my way. It not only lets me track my issues, but it also helps me learn the database technologies I need to know for my professional work.

I am constantly thinking about where I’m at, what I’m doing, why I’m doing it. I am rarely at rest, and when I am, it is for the express purpose of regaining my strength so I can go back at my issues with all my might and deal directly with them. I am at times not the most organized with my self-rehab, but I’m making progress. And I track what I’m doing, to make sure I’m not getting too far afield. And I check in with my neuropsychs on a weekly basis.

I also use external props to keep me in line. I build exercise and nutrition into my daily routine, so I have no choice but do do them — if I break my routine, I’m lost. The anxiety level is just too high. I commit myself to meetings that require me to be in a certain place at a certain time, so I have to keep on schedule. I work a 9-5 job that forces me to be on-time and deliver what I promise. I surround myself with people who have very high standards, and I hold myself to them. As I go about my daily activities, I do it with the orientation of recovery. Rehabilitation. Life is full of rehab opportunities, if you take the time — and make the point — to notice.

In many ways, my external tool-making and structure-seeking is like being a hermit crab finding and using shells cast off by other creatures for their survival. I don’t have the kind of inner resources I’d like to keep myself on track, and I don’t have the innate ability/desire to adhere to the kinds of standards I know are essential for regular adult functioning. I’ve been trying, since I was a little kid, to be the kind of person I want to be, and it’s rarely turned out well when I was running on my own steam.

So, I put myself in external situations and engage in the kinds of activities that require me to stay on track and adhere to the kinds of standards I aspire to. I seek out the company of people who are where I want to be — or are on the same track that I want to be on. And I “make like them” — I do my utmost to match them, their behaviors, their activities. And it works. I do a damned good impression of the person I want to be — even when deep down inside, I’m having a hell of a time adhering to my own standards.

The gap between who I want to be/what I want to do with my life, and how I actually am and what I actually accomplish is, at times, a vast chasm. I have so many weak spots that feel utterly intractable — and I need to do something about them. So, I use the outside world to provide the impetus and stimulation I require to be the person I know I can be, and to accomplish the things I long to do. I use the supports I can get, and I use whatever tools I have on hand. I fashion the world around me in a way that supports my vision of who I can be and what I can accomplish in my life. and I just keep going, layering on more and more experiential “shellack” that supports my hopes and dreams and vision.

Dear reader, if you only knew how different my fondest hopes and most brightly burning dreams have been from my actual reality throughout the course of my 4 decades-plus on this earth, you would weep for days, maybe weeks. But this is not the time to cry. Not when I have within my reach the means by which to put myself on the track I long for. Not when I have the resolve to take my life to the next level. Not when I have — at long last — the information I need to understand my limitations and my cognitive-behavioral makeup. Not when I have the drive and desire to live life to the fullest, to love and grow and learn and … and …

But enough — the day is waiting, and I have things I must get done.

Peace, out

BB

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.

Poor Memory + Anxiety = Too Much To Do

I had a revelation the other day… they just keep coming…

One of the reasons that I end up with too much on my plate is that I literally forget that I have things going on already.

That’s not a terrible thing, in and of itself, but when I get nervous and/or excited, I tend to seek out things to do, and if I forget that I already have a full plate and don’t keep in mind the things I need to get done, I take on more things that excite and enthuse me, but are completely new and different and have no bearing on what I’ve already got going on.

So, I pile up more and more things, forgetting that I already have more than enough to do, and I end up with a huge stack of stuff that needs to get done, but that cannot possibly all be taken care of in a timely manner.

That leads to overwhelm, which leads to ineffectiveness, which leads to discouragement, which leads to ever decreasing self-esteem… which makes it harder and harder for me to function properly, or feel good about myself when I do function properly. It’s hard to feel good about what you’ve accomplished, when you continue to have a massive backlog of crap that still needs to get done.

And I’m tired of not being able to enjoy my successes, because of my self-imposed “failures”.

Now, for years, I thought that the main reason I got into new projects before I finished the old ones was that the old ones simply bored me or didn’t hold my attention well enough, and I lost interest. But when I look more closely at the pattern of behavior, it’s not that I lose interest. I’m keenly interested in what I’m working on, at any given point in time. The things is, I literally forget what I’m supposed to be working on. I lose track of what steps to take, I don’t have all my materials in front of me, and I can’t remember what I’m supposed to do next.

I do have a lot going on, on any given day. And objectively looking at what I have happening, it’s actually quite exciting to me, on many levels. That’s why I get into these things — they interest me, and I love working towards and achieving my goals. And it’s so frustrating to me that I get so few of them accomplished, relatively speaking.

I could never seem to figure out how to keep myself consistently on track. I tried all manner of things to keep my interest engaged. But now I realize, it’s not my interest that fails me, it’s my memory. My mid-term memory for the in-between steps that are getting me to my ultimate goal. It’s not that I stop caring about what I’m doing; I stop remembering what’s next. It’s not boredom that’s getting in my way, after all. It’s forgetfulness.

Which is helpful to me and my understanding of the issues I face. All along, I thought that I was basically unable to sustain interest in what I’m working on. I thought there was something wrong with me, that I would start these really involved projects, and then drop them for no apparent reason. It’s happened to me, ever since I was a young kid. I would start exciting projects for school, or start a yard cleanup job for a neighbor, but then I would get distracted or get pulled away to some other activity, and I would never go back to the project I was working on before. It used to drive my parents and teachers and neighbors crazy. They just didn’t know what to make of me and my behavior.

They seemed to think I was stupid or lazy or I didn’t want to do the work. I can hardly blame them, when I would walk away from a job… forget to go back to it… then remember I was supposed to get paid and show up at their door, expecting payment for a job I never finished. How else could they have explained my inability to complete special school projects that I, myself, had designed and decided to do? I would get all enthused about something, then get swamped in the details, then go off and do something else to relax, then I would literally forget what I was originally supposed to be doing, and either nobody was there to help me remember, or the people around me would not realize I needed to be prompted, and they’d get angry with me for being lazy or contrary or undisciplined.

Ugh!

Well, anyway, now that I’ve got a clue about how my crappy memory has made my life miserable and ineffective, all these years, now I can do something about it.

I’ve put together a list of all the things I’ve started, but either forgot to complete or put off finishing. It comes to more than 50 items (I’m at 51 and still adding).  Some of these things are very important to do, and I’ve got to keep them in front of myself. Some are nice-to-have’s and I can let them wait. But there are some particular projects which I cannot afford to let drop — especially ones for work. I’ve got to cultivate better work habits and use some of my tools more aggressively to right this bad trend.

So here’s what I’m doing about it:

I’ve made a list of the most important, most vital things I need to do, and made notes about exactly why I want/need to do them. I have prioritized them and I am tracking them as I take care of them.

I copied my list onto a large stickie note and put it in my daily planner in easy view each day, where I see it each time I open my planner to the day I’m on. When I complete an item, I check it off, and I remind myself regularly that I am making progress, and how important it is, and how good it feels to do it.

I also plan to make a wallet card of the most important goals I have, so I can carry it with me and look at it frequently. The purpose of it is not just to remind myself of what I need to do, but also remember what I have accomplished, so I can move forward with confidence and self-regard.

It’s  a process, of course, but at least I’m getting somewhere. And at least I realize one of the root causes of my ineffectiveness over the years and I don’t have to beat myself up over it (quite as much) anymore.

It’s all good — and getting better!

Writing lots to keep things simple

I had an epiphany today during my morning exercise. I realized that one of the reasons my life tends to fill up with all sorts of activities and I get swamped by so much to do – and spread so thin, I can’t focus fully on what’s in front of me… is because I forget what I am supposed to be doing. Not only that, but I forget why I am supposed to be doing it.

Someone wrote to me the other day that they used to feel like the guy in “Memento” who has to write everything down, because he can’t remember, from day to day, moment to moment, what he’s supposed to be doing.

It got me thinking… and I realized that I’m like that to — not on so extreme a scale, but this Swiss cheese memory of mine is problematic. And with my constant restlessness, I have so much energy, that I have to be doing something, but I don’t remember what exactly I’m supposed to be doing, or why, so I end up launching into another bunch of activities without realizing I’m forgetting something.

It’s like I have a rushing river in my head, and the gaps in my memory are like big boulders in the river. I’m in a boat that’s headed down river, and because all these boulders are in the way, I can’t go in a straight line. I end up flying downstream at top speed, but I get spun around, I bump into things, I go way out of my way on tangents, and I have to paddle like crazy to keep upright.

Meanwhile, the rest of the world is paddling downstream in rivers with far fewer rocks, they are better able to keep upright, and they arrive at their destinations a lot less exhausted and bedraggled and frazzled than I do.

Literally, when I get up in the morning, it’s like I’m starting a whole new day. That’s great for my optimism and general cheerfulness, but it’s not so great for my effectiveness. I tend to not think about what I was doing the day before, and how it ties in to what I’m supposed to do today. And if I’m not careful, I can get caught up in a whole lot of stuff that I don’t need to be doing, and which keep me from finishing what I’m working on, but which seem so interesting at the moment…

It’s been a huge problem for almost as long as I can remember — and even more so, since my fall in 2004. It’s impacted my work and my family life and my self-esteem, and I can hardly believe it’s taken me this long to realize this fact and the impact that it’s had on me.  No wonder I can’t get anything done in a timely manner — I keep forgetting what I’m supposed to be doing. But at least now I am aware of it. (It’s amazing what happens, when you communicate with another human being.) And now that I’m aware of the problem, I can devise a strategy for dealing with this.

My strategy is:

Keep a running list of the really important things I’m supposed to be doing, and make sure it is in easy view of me each and every morning. Keep that master list with me throughout the course of the day, and keep checking back with it.

I have to refine this, certainly. I have to figure out how to prioritize and manage my items, so I don’t get completely overwhelmed. A spreadsheet will probably help. I have one that I use for the Big Things I Need To Fix in my life. Now I need to come up with a way to record and track the everyday things I’m working on. I may also use a handwritten list. I’m still working it out, as I learn more about how my brain does — and doesn’t — work.

I do know that the more I write down about what I’m supposed to be doing, the simpler it becomes to get things done. My writing (especially in my journals) extends beyond the list-making and into the story-telling aspects of my life. When I write things down in detail (tho’ I have to be careful of getting swamped in the details), it helps me envision where I want to go and what I want to achieve — and why. The more I can work out in my mind, ahead of time, what I want to do, the less I have to think about it later. I can just look at my list and, step by step, get things done that need to be done. It’s important. Very, very important.

Well, it is a process, and it’s one that keeps evolving, as I get more and more information. The bottom line is, now I realize that having holes and weaknesses in my memory is one of the root causes of my ineffectiveness over the years. It’s not because I’m a loser or lazy. It’s because I literally forget what I’m supposed to be doing, but I have so much energy, I can’t just sit there, so I start other things… and then forget to complete them. It can be maddening. But that’s where tools and strategies come in.

It’s all a process. I’m just relieved I’ve realized how this aspect has impacted me. After all, you can’t fix something if you don’t know it’s broken.

I haven’t got time for the pain

I haven’t got need for the pain, either.

I confirmed something very important, this past week – if I do not exercise vigorously, first thing in the morning before I do anything else, I pay for it in pain.

For those who know what it is like to battle chronic pain on a daily, weekly, monthly, yearly basis, over the course of months, even years, you know what I mean, when I say, I will do anything in my power to keep this pain from taking over my life.

For those who are lucky enough to not have that experience, you can say instead, I will do anything in my power to keep [insert something you detest and despise] from taking over my life.

I happen to be one of the former types, plagued all my born days (at least, as far back as I can remember) with pain. Painful touch. Painful movement. Painful just about everything. The only times I have been pain-free have been in the extremes of human experience — when I am either so deeply engrossed in what I am doing that my focus blocks out any sensation at all… when I am pushing myself beyond my limits to see how far I can go… when I am so deeply relaxed and entranced that nothing of human experience can penetrate the divine aura that surrounds me.

In those extreme places, I am free of pain, I am more than myself, I am a piece of a very, very, very large puzzle that dwarfs discomfort with its vastness.

But one cannot always live in the extremes. I’m neither a cloistered monastic, nor a sheltered academic, nor a professional athlete, nor a maverick rock climber. I am a regular person with a regular life, and that life just happens to be fraught — at times — with almost constant pain.

Ask me if I have a headache on any given day, and my answer will not be “yes” or “no”, but “what kind of headache?” and “where precisely do you mean?” It’s a given, that my  head will hurt. And my body, too. It’s just a question of degrees.

At its worst, the pain is debilitating. 20 years ago, I had to stop working and drop out of life for about 5 years to get myself back on my feet. Over the decades since then, the pain has fluctuated, its impact on my life varying. The variation has been due, in no small part, to my mental determination to not let it stop me. In many cases, I refused to even acknowledge it, even though objectively I knew it was there. I went for years telling myself  I was pain-free, while at night I would be forced to stretch and press points up and down my legs and take plenty of Advil to get myself past the searing ache in my legs, hips, and back.

Denial is a funny thing — so useful, so essential, at times, and so easily used, even when facts to the contrary are obvious and intrusive.

Over the past several years, however, as I’ve become more and more cognizant of my TBI-related issues, pain has made itself known to me, and I have ceased to deny it. It’s a double-edged sword, that. Even if I don’t deny it and am determined to do something about it, my plans don’t always work, and I cannot always accomplish the level of pain control I would like.

In those moments when my honesty is far more than my ability to deal effectively with my discomfort, I curse my newfound determination to be upfront and frank about every little thing that is amiss with me. I have so many other issues to think about — do I need to add unstoppable, unmanageable, uncontrollable pain to the mix? Wouldn’t it make a whole lot more sense, to acknowledge and focus on issues I can actually fix?

But now that the lid is off Pandora’s box, there’s no sticking it back on. I have to address this pain situation, I have to do something about it. I cannot just sit around and boo-hoo. Nor can I run away from it and keep telling myself it’s not an issue. It is an issue. A very sticky, troubling, problematic one that holds me back, perhaps more than any other issue I have. It’s not just physical, it’s emotional and psychological, too. And it demands acknowledgement and work, to address it.

So, I do. I get up in the morning — like it or not — and I exercise. I roll my aching, complaining body out of bed, pull on my sweatshirt over my pajamas, slip my feet into my slippers, grab my clipboard and pen, and I haul my ass downstairs. I fill the kettle with water, put it on the stove, and turn the knob to 3 or 4, to give myself plenty of time to work out before the water boils. Then I pull the curtains in the room where the exercise bike is, so I can work out in private, put my clipboard on the magazine holder on the exercise bike, climb on, make a note of the time I started, and I begin to pedal.

I ride for at least 20 minutes — 15, if I’m really behind in my schedule — and I work up a sweat. I hate and resent the first 10 minues of every ride. It is boring. It is monotonous. It is sheer drudgery. But it is necessary. If I don’t exercise, move lymph through my veins (the milky white substance that moves toxins out of our systems doesn’t move on its own — it requires circulation to clear out the junk we put in), and oxygenate my brain.

After the first 10 minutes, my brain has started to wake up and is complaining less about the ride. About that time, I start to think of things I’m going to do for the day, and I start to make notes. I scribble on my clipboard, trying to control my handwriting well enough to read my notes later, and I make an effort to be careful and legible. On and off, I pick up my pace and push myself, working up a sweat and an oxygen debt that gets my lungs pumping. When I’m warmed up and getting into a groove, my mind wakes up even more, and I let it wander a bit — kind of like letting a squirrelly puppy off its lead when you take it for a walk in the park. I let my thoughts ramble, let my mind race here and there, and then like walking a puppy, I eventually call it back, focus once more on my day, and make more notes about what I need to accomplish.

When I’ve reached my 20-30 minute mark, I stop pedaling, get off the bike, and go check on my hot water. I turn up the heat, if it’s not already boiling, and stretch in the kitchen while the kettle starts to rumble. When the whistle goes, I make myself a cup of strong coffee, and while it’s cooling, I stretch some more. I drink a big glass of water as I stretch, feeling the muscles and tendons and fascia giving way to my insistence. I’m warmed up, after pedaling, so I can stretch more easily. I can move a lot better than when I got out of bed, and I’m actually starting to feel pretty good about doing this exercise thing, as soon as I get up.

Once I’ve stretched, I head back to the exercise room and lift my dumbbells. I work with 5 pound weights (for now), moving slowly and deliberately. I focus intently on my form — practicing my impulse control. I make sure my body is aligned properly and my motions are smooth and not stressing my joints and ligaments and tendons. There’s no point in exercising if I’m going to just injure myself. I do a full range of upper-body exercises, presses, curls, flys, extensions, pull-ups… all the different ways I can move my arms with my 5-lb dumbbells, I work into the third part of my routine. I take my time — deliberately, for discipline and focus and impulse control are big problems for me that really get in my way — and I work up a sweat as I hold certain positions and move far more slowly than I prefer.

When all is said and done, my legs are a little wobbly and my upper body is warm with exertion. I am sweating and a little out of breath, and my body is starting to work overtime to catch up with itself again.

By the time I’m done, my coffee has cooled enough to drink it, and I can make myself a bowl of cereal and cut up an apple to eat.  I sit down with my clipboard again, make more notes, review what I need to accomplish, and I get on with my day.

The days when I skimp on the effort and take it easy, are the days when I am in the most pain at the end of the day. The days when I really push myself with my weights, moving sloooooowly through the motions and keeping myself to a strict form, are the days when I have the most energy and am feeling the most fluid. The days when I don’t stretch very much, are the days I have trouble falling asleep at night. And the days when I do stretch are the ones when I am able to just crash into bed and am down like a log all night.

Two days, this past week, I did not do my workout full justice, and I paid dearly for it, the rest of both days. I learned my lesson. I haul myself out of bed, now, and I hold myself to a disciplined workout. Anything less gets me in trouble.

I’ve got enough trouble, without the pain on top of it. And if there is any way I can cut back on whatever complications I can, I’ll do what I can to do just that.

It’s hard to start, it can be tedious to do, and it often feels like an interruption to my morning, but without it, my day is toast. And I am lost at sea… floating in a brine of burning, searing agony that surely must have informed the medieval concept of eternal hellfire and brimstone.

And yet, something so simple can push back the waves, like Moses parted the Red Sea. Something so simple, so basic, so good for me. Salvation comes in strange packages, sometimes. But it’s salvation nonetheless, so I’ll take it.

After all, I’ve got much better things to do with my life than suffer needlessly.

Practice, practice, more practice

I’m feeling perky today. I didn’t get enough sleep last night, but I got up and rode the exercise bike, stretched a little, and then lifted my weights. I just do 5-lb dumbells, and I focus on my upper body, and it feels great. While I’m lifting, it feels like such a chore and a pain in the butt, and I can’t wait for it to be over.

But I use overcoming this reluctance as an exercise in impulse control and personal discipline, which I sorely need to re-develop. Before my last injury, I was a machine. I would go to the gym religiously and I was intensely disciplined about my health. After the accident in 2005, that just fell apart, and I’ve vowed to get it back. It’s paying off in a big way. I feel better about myself and my ability to be the person I know I am. And when all is said and done, I feel GREAT! Lots of good energy. Plus, I don’t need to drink all that coffee anymore, ’cause my day is off to a good start, and I’ve got plenty of juice to spare till much later in the day, than if I don’t exercise.

I’m really pleased with the training routine I’ve gotten into. And I’m expanding it into social areas as well. I plan my day and think about what I want to do with myself that day. Also, I practice my conversations with other people while I’m riding the bike, which helps get my mind off the monotony of the pedaling and keeps my brain occupied.

One of my secrets to continued improvement is that I’ve gotten into practicing my interactions with important people in my life — most notably my neuropsychologist and my therapist. Those working relationships are my lifelines, and I don’t want to screw them up, because I get so much out of them. I was very dissatisfied with how I was behaving around them — not very smooth, socially, getting lost and not remembering to talk about certain important things I had promised myself to bring up. I just wasn’t performing very well at all.

I knew I could do better. I wanted to do better. So, I started “running lines” with/about these people in private. I basically practice interacting with them when I’m by myself, so when I am with them in person, I can be more fluid and relaxed and not stress out with how poorly I’m performing. I make up conversations with them, rehearsing how I intend to interact with them later on.

My spouse has gotten used to hearing me do this — in the shower, while I’m washing dishes, while I’m working in the yard, while I’m by myself in my study. At first, they thought I was losing my mind – they were just jealous because the voices were talking to me ;), but when I told them what I was doing, and it was clear I was lucid and not completely delusional, they got used to the sound of my voice having an animated conversation with thin air.

I practice outside the home, too. That’s where a cell phone really comes in handy. If I know I need to speak at a meeting or have an important discussion with someone, I rehears it with my cell phone attached to my ear. Nobody knows I’m not talking to anyone. Nobody can tell. I’ve got my cell phone clamped to the side of my face, and I’m very animated, so surely there must be someone there. I often rehearse my life while I’m driving to and from work, too. I have these really interesting conversations with an imaginary person, and if people in other cars start giving me looks, I lift my cell phone, so it looks like I’m on speaker phone, and their curiosity is satisfied.

I’m sure it sounds a little bit insane, but the rehearsal is really paying off! I’m actually able to exchange information with the most important people in my life better than ever, and I’m much more interactive than I was just a few months ago. Each time I meet with someone I have virtually rehearsed with in person, I do a little better, and I’m actually starting to look (relatively) normal when I talk with them. At least, I think so. My neuropsychs have noticed a difference, too. At the very least, I’m not tearing up and twitching when I talk to my shrink anymore, which is good progress for me.  I friggin’ hate that affective lability stuff — that’s where your emotions are all over the place and you fall to pieces over absolutely nothing — it’s personally, mentally and emotionally debilitating. And it’s not like me at all.

I got the idea of practicing in advance after I came across the concept of “Stress Inoculation Training” about a year ago. It’s all about reducing the amount of stress in situations by experiencing them up front and acclimating yourself to circumstances that might cause you stress. Conversations with some people are very stressful to anticipate, so I had to come up with a way to deal with this, and stress inoculation training seemed like a good idea. I don’t have an exhaustive understanding of it, but I get enough of it to help myself.

Oh, and there’s the theater connection. I have hung out with theater people for years, and one person I know rehearses every single important conversation they’re going to have with a friend, relative or confidante. I thought for years that they were nuts… until I tried it myself in private and found out how well it works.

I must spend at least 5 hours a week, practicing for my various therapy sessions, and I’m really happy with how well it’s going. I’m actually able to show up and be myself. It sounds strange to me, to think I have to practice being myself — shouldn’t I just be able to do that? Other people can? But I think the stress just gets in my way, so I have to take other steps. And I do. It’s a thing of beauty, when it works, and it’s been working.

Now, not every conversation I have with them goes the way I want or expect it to, but practicing at least some sort of conversation with them enables me to feel more comfortable overall, which frees me up to ad-lib, which is turning out to be fun and productive. I tend to forget a lot that we talk about, but I’m doing better at remembering to take notes when it’s important.

The other nice thing is that the better I get at having these conversations with people outside my immediate circle, the better I get at having more reciprocal conversations with people who are close to me. I keep having these conversations with people that are many times longer and many times more involved than the typical exchanges I’ve had for more than 40 years. It’s quite remarkable that I was so impaired before, and I can’t quite believe I’ve gone this long with the basics of conversation never making much sense to me, but now I’m learning and figuring it out, so that’s very cool.

Expanding the idea, I’ve also been practicing going through the steps of doing tasks I keep messing up at work. I’ve been practicing talking to my new boss and new colleages. I’ve been practicing, practicing, practicing.

And it pays off.

Woo hoo.

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…

What an amazing article on brain injury

Thank you Malcom Gladwell for this amazing piece – “Offensive Play

I really don’t have the words to say how much I appreciate this. As someone with friends who have both been boxers and who have played football, and who has sustained numerous concussions, myself, writing like this that reaches a mainstream audience is truly priceless.

Thank you Mr. Gladwell. From all of us.

And SHAME on you, if you take advantage

… of “sinfull” women who have sustained TBI.  It just occurred to me (I can be slow on the uptake) that people might use this information about people who have had brain injuries against the women who have survived them, basically using their limitations against them in the most degrading way.

Shame on you, if you do such a thing.

Shame.

It’s not uncommon for women — and men — to be preyed upon after they have sustained a limiting injury. And it’s not uncommon for people to cruelly use others who have some sort of cognitive limitation(s). It’s sick beyond belief and profoundly disgusting, but there it is.

If you’re a woman reading this, keep in mind that certain men will do such things — they’ll try to play to your “sinfull” side for their own sick jollies. Certainly, not all men do this, but some will. It’s been documented all too often in the court system.

So beware, if you’ve sustained a head injury. There are plenty of predators out there who will take advantage of others. By all means, don’t expect telling them you’ve had a TBI to make things any easier — or safer.

I suppose the same thing can be said for/about men. People prey on people, regardless of gender.

But since people have been winding up at this blog after searching on “sinfull women with tbi”, I just thought I’d finish the thought I had.