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

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Thinking about PTSD and Tetris…

I’ve been giving some thought to the whole “Tetris fixes PTSD flashbacks” concept, over the past few weeks.

Some people agree, others don’t. Here’s an interesting discussion over at Vetvoice.com about it.

I have to admit, I have found some relief while playing Tetris. It’s so interactively neutral — no people to shoot, no mortal danger to avoid, no sudden loud sounds and flashing colors to tax my already frazzled system. I have tried playing it when I was extremely agitated about stuff that was coming up in therapy… flashbacks, in particular. For whatever reason, I found the flashbacks subsiding and images of dropping brightly-colored Tetris pieces showing up instead of the shadowy figure appearing suddenly in front of me. It seemed me me that Tetris images were literally replacing the unwanted flashbacks.

Or maybe it’s just me. But I can tell you, my system really started to chill out. I don’t think it’s a coincidence.

One of the commenters at the discussion about this over at Vetvoice.com suggested. “And why not win every tetris computer game you play, while you’re at it design a new one!”

It made sense to me, so I decided to do just that. I’ve been working on alternative versions of the game, with different colors. My first attempts are a bit rudimentary, the changes being isolated to the colors alone. But it’s working.

Tetris Screenshot 1

Tetris Screenshot 2

Tetris Screenshot 3

You can get to “PTSTetris” by following this link: http://ptstetris.110mb.com/

I don’t know if it really works, but the logic seems sound. I think we can’t make generalizations all across the board about whether it will fix what’s wrong, but if nothing else, spending a few minutes rearranging colored blocks beats flashing back on wretchedness that intrudes on my regular day, getting all anxious and agitated and freaked out over stuff that happened a long time ago in a very different place.

I’ll probably be creating more color schemes, as time goes on, but for now, at least this is up and running.

Cheers

PTST – Post-Traumatic Stress Tetris

This has not been an easy few weeks. I tend to make light of my difficulties, and try to not get all mired in them, but between my job stress, money problems, social issues, and the resurgence of some pretty intense pain that just won’t quit, it hasn’t been a walk in the park.

I don’t want sympathy, but I do need to say it out loud, so I don’t keep denying the impact it’s having on me.

I think that Natasha Richardson’s fatal accident also threw me for a loop. There’s part of me that doesn’t understand why I could have so many bad falls and survive, while she didn’t have as rough a tumble (from what I read), yet she’s gone. On the one hand, I’m so very grateful to still be here. On the other, I am feeling some survivor’s guilt that is buried very deep and is taking a while to get to the surface.

On top of this, I’ve been dredging up some rough old “stuff” that happened to me 25 years ago that was pretty bad. Basically, I got my wires crossed with the wrong person — I wasn’t reading their social cues very well, and it turned ugly, and that person was not only an active addict and alcoholic, but they were overly aggressive, as well. So, I got my ass kicked. More than once.

It left me not only physically injured, but it set me back pretty intensely in other ways. I couldn’t figure out what I’d done wrong, I couldn’t figure out why it had happened, and I ended up isolating and acting out in un-helpful ways, and generally going downhill and ending up with some nasty post-traumatic stress.

Now I’m dealing with it in therapy, and it’s not pretty. I couldn’t have picked a worse time to deal with this, considering everything that’s going on with my job and health and bank accout. But there’s never a good time to deal with this crap, so what-evah. Fine. I’ll deal with this, too.

I’ve not been sleeping well, and I’ve been having flashbacks. Unpleasant stuff. Trying to navigate all this is bad enough, but my TBI situation isn’t helping. I’m pretty much at an impasse with what to do.

One thing that has helped me with my flashbacks, playing Tetris at http://www.gosu.pl/tetris/.

I don’t know what it is about the game, but I’ve been playing it, on and off over the past couple of weeks, and it actually seems to be helping me with flashbacks. Something about the movement and the colors and how emotionally neutral the shapes are, is very soothing.

I had read something about it helping with ptsd flash backs — and why it may work. I’ll have to dig that up and write about it. It’s pretty interesting, I think.

But for now, I’ve got to get going to work and see what the day ahead of me brings.

Playing Past PTSD – Using Tetris to Relieve Trauma

A little while back, I came across mention that playing the game Tetris can help relieve — or even prevent — post-traumatic stress disorder (esp. flashbacks), if it’s played immediately after a traumatic event.

Can Playing the Computer Game “Tetris” Reduce the Build-Up of Flashbacks for Trauma? A Proposal from Cognitive Science by Emily A. Holmes*, Ella L. James, Thomas Coode-Bate, Catherine Deeprose from the Department of Psychiatry, University of Oxford, Oxford, United Kingdom published a paper you can read here. The abstract is below.

Abstract
Background

Flashbacks are the hallmark symptom of Posttraumatic Stress Disorder (PTSD). Although we have successful treatments for full-blown PTSD, early interventions are lacking. We propose the utility of developing a ‘cognitive vaccine’ to prevent PTSD flashback development following exposure to trauma. Our theory is based on two key findings: 1) Cognitive science suggests that the brain has selective resources with limited capacity; 2) The neurobiology of memory suggests a 6-hr window to disrupt memory consolidation. The rationale for a ‘cognitive vaccine’ approach is as follows: Trauma flashbacks are sensory-perceptual, visuospatial mental images. Visuospatial cognitive tasks selectively compete for resources required to generate mental images. Thus, a visuospatial computer game (e.g. “Tetris”) will interfere with flashbacks. Visuospatial tasks post-trauma, performed within the time window for memory consolidation, will reduce subsequent flashbacks. We predicted that playing “Tetris” half an hour after viewing trauma would reduce flashback frequency over 1-week.

Now, it’s been a while since I had a really traumatic experience — tho’ the winter storms we had last December did leave their mark. But I thought I’d just see if I could find Tetris online, and I did — JS Tetris 1.17

It will run in your regular browser using javascript, and you don’t need to download anything different or special to run it.

I like this game because it has vertical lines that help me line up the pieces that are “falling”. The pieces are brightly colored. And the controls are on the arrows on my keyboard, not the numbers, which tends to get me turned around. Also, I can restart the game anytime without it complaining at me. Some games make me feel pretty inadequate when I stop them before I finish. Or they try to upsell me and get me to purchase a “full” version. No thanks. I just want to start from scratch.

I don’t know if Tetris does any good in the long-term, but I know after spending a little time playing this a.m., I’m feeling a little more focused.  And after mucking up about seven different tries at filling up the bottom row, I’m ready to do something useful and productive with my time. So, playing Tetris poorly — in its own way — helps me get past my issues, t0o 😉

Something for everyone.