Still managing TBI issues, still paying attention…

Brain injury is a funny thing — not funny as in “Ha-ha-ha”, but funny as in “How weird – I didn’t expect that to happen at all”.

One day, I’m fine, feeling good, and not sure how or why I ever had issues before at all.

And a few days later, I’m teetering on the edge of complete nervous breakdown, trying to talk myself back from that edge with what I hope is a calm and soothing demeanor.

It’s really weird, how things just suddenly become HUGE ENORMOUS PROBLEMS, for no apparent reason. Well, actually there are very good reasons, and when I track them over time, I can usually see how they happened. The thing is, leading up to those HUGE ENORMOUS PROBLEMS, I’m feeling good, I’m feeling fine, and things seem like they’re going along at a pretty good clip.

And all seems like it’s well. For all time. And I forget that it’s ever been any other way.

Or that it could possibly become any other way, without an instant’s notice.

But it can get ugly fairly quickly, and when I’m least expecting it. I’m not expecting it, because my attention is focused on other things besides my frame of mind and my stress levels. I’m caught up in something “important” — and it often is, despite my diminutive quotation marks — and I have a lot on the line, and I feel like so much is riding on me doing such-and-such in a certain specific way… I’m caught up.

And that’s when I get caught out. Pants down. Short and curlies waving in the breeze. And I have to stop the madness, back up, and start to put things back together again.

It doesn’t much matter whether all the excitement I’m dealing with is good or bad — I get tired and my system gets stressed in either circumstance. In fact, if anything, good things bode worse for me, because I get so caught up and so consumed by what I’m doing, and the energy is high, and I’m getting more and more tired but I don’t even notice it, because there’s so much good happening around me. And I don’t want it to stop. So, I keep going, keep pushing myself, keep stressing my body with a lot of adrenaline, but not always a lot of good food and water and rest.

When unfortunate things are happening with me, it can actually be less stressful overall, because I’m aware that I need to actively manage my stress levels, eat right, get enough rest, etc. Because there are “bad things” happening, and I need to be up to the task at hand. So, when things are rough, I’m actually less stressed overall. Here, let me show you:

The good, the bad, and the results – the higher a rating is, the better it is. The lower it is on the chart, the worse the situation is.

Click the image above, and you can see the relative difference between sleep deprivation, anger, anxiety, and excitement – and you can see that my “AMF” (or “Active Management Factor”, which is the rating I give myself for how much attention I am paying to my situation) is actually a bit higher when things are bad – which translates into less anger, less anxiety, and less sleep deprivation. And more excitement. The less well I manage myself when things are going crazy around me — even if it’s a good crazy — the less enthusiasm I have over time, as well, so it’s an all-round whammy, when I don’t pay enough attention to myself and my state.

When things are rough, then I tend to pay closer attention, because I know bad things can happen. But when things are going well for me, I tend to not actively manage my situation, and then I lose out on things like sleep and good food and also excitement. Keeping up the excitement when I’m dog-tired is even more work, even if the excitement initially drives my behavior that deprives me of sleep.

I can easily get complacent, when things are going well, but the net effect on my overall system is the same — I wear out.

That’s kind of where I am right now – I spent about 15 hours yesterday working on a project that I am very fond of, and which I believe has a lot of potential. But today I am wiped, and I’m feeling pretty antsy. I did a LOT of work yesterday that was good, and now today I am feeling the effects of it. So, I need to take away the arbitrary deadline(s) I set for myself, and stop stressing myself over this. There is a lot of stress going on at work, these days, and I can’t afford to let everything get the better of me… which is the line I’m treading right now.

I need to be smart about this… and also manage this situation actively. It doesn’t help me at all, if I push and push and push… and then end up with a crappy result. I need to give myself more time, not let the adrenaline and arbitrary deadlines drive me. I need to do a reality check and just get myself collected and sane again.

Because I have more to do today, than just work on my project. And my project is the one part of my life that I’m NOT driven by someone else’s insanely stupid deadline. So, I can cut myself a break. Give things some thought, and let reason drive my motivation, not some crazy lottery-style pipe dream that’s going to solve all my problems in one fell swoop. That’s no good. Let reason prevail.

And so I shall. Because it’s a beautiful day. And I want to keep it that way.

Bringing light

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

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

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

Hm.

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

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

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

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

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

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

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

And it continues to get better.

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

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

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

Yes, let there be light.

A strangely vulnerable place

What does the shadow know?

I recently was pointed to an excellent blog post by someone who writes about disability. Her post No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters really struck a nerve with me. She basically took to task the author of a blog post that went viral, recounting personal struggles with a challenged kid and what she felt she was forced to do. She seemed to truly believe that her kid might one day turn into a shooter like the one who massacred all those little kids and teachers in the Newtown, CT elementary school.

When I read the words of that mother who blogged about her troubled son and publicly “outed” him in ways that can — and will — follow him the rest of his life, frankly it was eerie. And like the author of No, You Are Not Adam Lanza’s Mother, it really bothered me, hearing a mother tell the world about her usually brilliant, sometimes violent son. To all appearances she was calling out for help. I got that. But I also had to wonder – what about her son? And not only now, but what about later?

Certainly, it must be horribly, terribly difficult for any parent to struggle so much with a kid like that. I feel a great deal of compassion for her. At the same time, I also cannot help but think of my own mother, who spent much of my childhood reaching out for support and help from her friends, by telling them what a difficult time she was having with me and one of my other siblings, who was also a “problem child”. I can remember quite vividly the winter vacation we took with the family next door, when I was 12 or so, and I overheard my mother complaining with great anguish about me and my anger. She could not understand why I was so bitter, so angry, so uncontrolled. I’ll never forget the tone of her voice, the disgust, the helplessness, the blame — as though my anger, regardless of the cause, was an insult to her.

I was making her look bad.

After all, my other siblings were so good — except, of course, for the other problem child who ended up addicted to heavy duty drugs, dropped out of high school in 9th grade, and was in and out of trouble with the cops for years. If only we could all be like the other three who were such good kids, such diligent students, so responsible for their age. If it weren’t for the two of us, everything would have been just right — no criticisms from grandparents, no condemning stares from strangers, no tsk-tsk-tsk from the “church family”. Just a nice all-American family growing up together in a happy little unit.

But of course, there was me… the kid who’d gotten hit in the head a bunch of times (not that anyone put two and two together and understand that was why I was so angry, so quick to act out, so impulsive, so unable to keep focused on anything for long). I was a problem. An embarrassment. A puzzle that could never be solved. I was the wedge between my family and perfection, the barrier between my mother and her happiness. My dad spent a lot of time traveling for his work, when I was a teenager, so he got out of dealing with us, most of the time. So, mom was left to deal with me and The Other One. We were her cross to bear. Especially me — at that point in time — age 12-13, when I seemed irreversibly at odds with everything in the world, including myself, and nothing could calm or soothe me except solitude and the company of my own imagination.

And I wonder about that kid who got basted in that blog post. I wonder how he must feel — how he’s going to feel. The sound of my mother’s dismissing, disparaging, judging, disgusted voice in that cabin in the woods, some 35 years ago, stays with me to this day, and it did a number on my head for years after I first overheard it. I cannot even imagine how that kid must feel, having his issues broadcast all over the world wide web, for all to see and read and think they know about.

Truly, it must suck.

What also sucks, is imagining what it means for the kid long-term. He’s been committed, and his mother has publicly said he’s a threat. What are the chances now, do you think, of him ever being admitted to a public school, or for that matter a college? What school would want him? What college — especially considering the episodes at Virginia Tech — will welcome him with open arms, with a record he’s already started at 13? It probably makes no difference if they sort out his meds. It probably makes no difference if his chemistry rights itself with his advancing years. And it certainly makes no difference, if he learns coping mechanisms and behavioral strategies that help him keep centered and grounded in the midst of any storm.

The damage is done. His face and his name are out in the open for all to see. He’s well and truly screwed.

But hey, at least his mom feels better, right?

What a strange feeling this is. I can only be thankful that my mother had no access to the blogosphere when I was a kid. If she had, she would have been all over it, broadcasting her woes and my ills to the world on every forum and blog and social media outlet she could get to. She did that sort of thing — old-school — as much as she could, with both me and my other problem sibling, with whomever she could, so long as they were willing to listen.

To this day, she hasn’t let go of the pain and humiliation and hurt which my ex-addict sibling brought to her and her otherwise perfect family. She continues to punish them with judgments and criticism and public humiliation, even decades after they had their last high. And she continues to treat me like I’m somehow deficient — to this day she still jumps a little whenever I make a sudden move, as though I’m still as unpredictable and volatile as I was when I was younger. It makes no difference that both of us kids have paid our dues and gotten our lives in order. It makes no difference that we are different. For her, we are just the same.

She remembers. She remembers what we did to her and her chance at perfection. And we will never live it down.

That recollection of what it’s like to have your mother broadcast your illness for her own sake… it’s only half the actual struggle with all this I’m having right now. The other half is with privacy, and the freedom to be anonymously imperfect in this increasingly invasive world. There’s a reason I don’t tell people who I am and where I live. There’s a reason that no one I know is aware that I keep this blog going. Because people just don’t get it. Unless you’ve been in this kind of situation, where your brain and your body and much of your life are all seemingly pitted against your will and best intentions, you cannot know how it is. But you can sure as hell judge. You can sure as hell condemn. And you can sure as hell make certain that your views are known — whether it be on Twitter, Facebook, blog comments, or some other online social medium. There’s just too much talk and not enough knowledge, too much criticism and not enough compassion.

And that is a battle I choose not to take on. Because it’s a losing one. A long and losing one, at that.

Now, being curious to see if there was any kind of response/backlash against the blogger who took issue with Pseudo-Adam Lanza’s mother, I checked back today. Sure enough, she got a ton of comments, apparently a lot of them were not that great. She followed up with a great post: Debriefing: On the Ethics and Implications of Outing a Child in the Media and she touched on many of the things I was thinking, myself. I hope you’ll read her piece – she says it all quite well.

In the end, like many people after the Sandy Hook Elementary massacre, I’m feeling quite raw and vulnerable, these days. But even moreso, as someone with a history of cognitive issues and anger issues and attentional issues that could easily be amplified and skewed by the scapegoating mob who are seeking to root out “bad influences” and “threats” from polite society. Behind every rock, there seems to lurk a demon. People are looking high and low, and you generally find what you look for. It’s truly bizarre, to feel that after so many years of working so hard to gain some semblance of normalcy, I should experience this sense of intense vulnerability — not as a victim, but as someone who might be targeted by the status quo, because of my past. Especially my childhood.

And it makes me reluctant to actually speak my mind and talk about what’s really going on “ïn here”. Someone might take it the wrong way, after all. And then what?

I know I’m indulging in some pretty far-ranging what-if’s… and yet…

Are people with mental illness going to be targeted by an uninformed and aching public? It’s quite possible.

Are people who have different cognitive capacities going to be singled out and marginalized by a world seeking desperately for ways to return to normalcy — a normalcy which never actually existed and we frankly will never “get back”? It wouldn’t surprise me if that happened.

Are people with known anger issues, who struggle with impulse control, who honestly and sincerely work towards keeping to stable ground and staying centered in the midst of chaos going to be seen as potential threats to those around them? I wouldn’t doubt it.

In the extremes, of course we have to be careful. We have to be wise and prudent and use our heads and not let the batshit crazy people loose their rage on the rest of us with tools of mass destruction. But there’s a whole lot of different kinds of crazy swirling around in many, many guises, and I for one wouldn’t care to be labelled by the maddening crowd and possibly targeted by those who “mean well” and are trying to protect their loved ones from threats they imagine are there.

Nor would I want my ills to be dragged out into the light of day without my consent or say-so, and marked as “a future Adam Lanza” — just because my mother needed to feel that she wasn’t quite so alone.

Not feeling sorry for myself (right now)

Light it up

So, life is going to be life. And very often the hardest things are the most rewarding. And very often I lose sight of that and start feeling sorry for myself that “everyone else” gets to just move at their own pace and do what they want to do, while I have to work overtime just to do the basics.

Boo hoo.

No, it’s not fair that I fell back in 2004 and it rearranged my life.

No, it’s not fair that other people get to just “get” things without having to push themselves like crazy.

No, it’s not fair that I have trouble sleeping, and even when I can sleep, I can never get enough of it, because life is calling me out to get on with it.

Not fair at all.

But “fairness” has nothing to do with it. We humans seem to have this odd sense of entitlement, like we deserve to take it easy, like it’s something we’ve “earned”. We treat ease like a prize we get for just being on the planet and living our lives. And if we’ve been through some difficult times, then, well, we really “deserve a break”. Personally, I think this is an invention of Madison Avenue in the 1950′s, when WWII vets and their families were really struggling with the emotional aftermath of the war, and convenience and comfort and junk food were presented as rewards at the end of a tough day — just something to keep us going. Then McDonalds came up with the 1970s jingle “You deserve a break today… so get up and get away… to McDonalds” (anybody else remember that little ditty? I can’t get it out of my head now – sorry)

It was really drummed into us – and I think maybe it predates WWII and goes back to the Great Depression, when nobody had anything, and times were so tough, and any little thing was a luxury. Or maybe it’s just part of human nature. But in today’s American society, it is so very prevalent that it’s almost second nature.

Hard work is bad (you should “work smart, not hard” – because apparently if you’re working hard, you’re an idiot). Labor is beneath us. Getting the job done is something you do through other people, not through yourself.

Might be a class thing, too — managerial class being “better” than working class, yada-yada-yada. What-ever.

Anyway, enough about everyone else. The issue with me is that I get tired, and when I get tired I get foggy and dull. Not thinking well. That’s got to change. I’ve got to learn to think/act clearly when all is going crazy around me — which it usually is. Just find that clear space in my head, heart & gut, and have that be the thing that defines me, not the craziness around me. I’ve got to learn how to do that in the moment, not wait for some down-time of meditation or quiet breathing so I have “enough time” to do it. There is never enough time. I make sure of that by having so many things I love to do, and always wanting to do them.

I’ve got to get my act together and just take care of business. And that’s what I’m doing. I’ve quit feeling sorry for myself and I realized yesterday that this is what’s going on with me — I’m just being badly behaved and I’m chock-full of self-pity. I also realize that the Big Job Change I had been wanting to make isn’t really practical. I’m trying to find the kind of work that I was doing over 2 years ago, and in this industry, those things change almost overnight. I am NOT current with my skills, and I’ve realized that I cannot and will not be spending every spare minute coming up to speed with those skills. It sounded so good at the time, when I was dreaming about just escaping where I’m at — but when I think about going back to typing all day, with my hands and wrists under all that stress… you know what? No thanks. I’ve had my vacation, I’ve rested up, and as a result, I’m getting much more realistic about my current situation.

Now, to keep myself from being down on myself for “screwing up” and trying to find work with recruiters that didn’t really suit me.

Just move on. Just get a move on. Keep going. Keep making progress.

I’ve had a couple of really long days — 14 hours of really hard work on Wednesday and 12+ hours yesterday. On the one hand, part of me feels like (and people are saying to me) that that’s wrong, it’s too much, it’s too demanding on me. But in actual fact, it feels good to be able to just knock things out, take care of what needs to be taken care of, and just get on with my life. Just get it all done. What others say, what others think, what others expect of me… that’s fine. Whatever. I’ve got my own mission, I’ve got my own agenda, and I need to stay steady with it.

I can’t run a head trip on myself about being “impaired” by too little sleep. So long as I just keep going, so long as I keep moving forward, even the little missteps along the way can be adjusted for. I’m in the process of adjusting for a ton of missteps over the past year, when I basically slacked off and coddled myself because life was hard and confusing and — frankly I was a spoiled brat.  Enough of that. Enough of the self-pity, the whining, the pissing and moaning. Just get on with it, already. Just move along. Keep steady, keep true to my vision and my own nature, and move forward. Sometimes back, sure, but ever onward.

And now, a word from Mr. Henry Rollins…

Navy SEALs Mental Training Video

The “Big 4″ Components of Navy SEALs Mental Training

1. Goal Setting – pick a goal, a “small chunk” of an overall goal, and focus on meeting it
2. Mental Rehearsal (visualization) – see yourself doing what you going about to do, and see yourself succeeding
3. Self-Talk – keep positive to override the negative effects of the Amygdala
4. Arousal Control – use long, slow breaths to quiet down the effects of fight-flight

Now, to see how I might use these same principles in combination to improve my own responses to perceived “threats” in my life…

Today I rest… and read… and write

Time to read... and digest

Well, I’m back from my working vacation. I had five days of work-work-work, from 7 a.m. till 8 p.m., then I had a few days to play. I got home in the wee hours, this past weekend, to find that my hot water supply had died sometime earlier that week, so I wasn’t able to wash off the contagion from the couple of plane rides I’d been on.

That was unfortunate.

But on the up-side, I was so wiped out that I slept about nine hours straight — a record for my recent patterns. And by Sunday afternoon, the repairman had come out and set things right, so I was able to finally get my shower and get a nap. I slept for about three hours … and felt like I’d been trampled by horses when I woke up.

All that work and relaxing really took it out of me, I guess.

It’s really good to be home. I’ve missed my routine — waking and sitting/breathing and exercising, then working and writing. It’s good to get away sometimes and break up the set patterns — the effect it seems to have for me is making the set patterns even more valuable to me. Absence making the heart grow fonder, and all that.

And coming out of the experience, I can see some real signs of progress on my side. Last year, when I went to this same convention for work, I was an anxious, nervous wreck. I was convinced I was going to do poorly, that I would melt down, that I would be unable to function. I considered myself a ticking time bomb who couldn’t manage anything. But I was wrong.

This year went pretty well. I took care of business. I got things done. And it was pretty seamless overall, with only a few little bumps in the road that I handled as a matter of course. No sweat.

On the whole, the conference went well. And now I’m ready for something more to handle. I think, anyway. Or that could be my often-over-enthusiastic side of me not wanting to take the time to just relish the experience of doing better, and take on something bigger that’s more stressful, that’s more challenging. I’ve got to watch out for that stuff – I do tend to over-extend myself when things are going really well for me.

Like yesterday. While I was waiting for the repairman, I decided to do a little yardwork. It was a beautiful day, and I had the time. By the time three hours had passed, I’d completely re-raked my front yard, getting up a lot of dead grass to make room for new growth, and spreading some lawn lime to lower the pH of the soil. I wore myself out, which felt good. It also let me get some of my extra nervous energy out.

And now today I’m feeling the effects. I’m pretty sore and stiff, which is fine, actually. I need to be more active, and this is the temporary state of pain that signals that my body has a chance to get stronger. The important thing to keep in mind, with strenuous exercise, is that rest and recovery are as important — maybe moreso — than exertion. Overtraining is always a danger with me.

So today I’m going to rest. And write.

Some things that I was able to do, while I was away, were read and think. I picked up a copy of The New Science of Breath and it’s given me a lot of food for thought. I’m familiar with a lot of the concepts that author Stephen Elliott talks about — in part because I’ve been reading his newsletters, on and off, for a couple of years. I am also familiar with the principles he talks about, from my own personal experience. In practicing slow, steady breathing, I’ve found that my reactions to unforeseen circumstances are much less intense and much less extreme, and I’ve found that I have more energy, I sleep better, and I generally feel better overall, when I practice this slow, steady breathing.

As far as I’m concerned, it’s one of the keys to my ongoing recovery from the after-effects of TBI/concussion. And I wish to high heaven that everyone could benefit from it as much as I have.

To say that it’s made a huge difference would be an understatement. It’s been a serious foundation for so much that I’ve been able to accomplish over the past years — and even before I knew about it and put all the science together, when I had concussions in the past and I was suffering with intense mood swings, insomnia, and cognitive issues, I instinctively  turned to breathing and sitting, as a solution.

After my last TBI in 2004, I stopped doing those things that used to help me so much, and I have no doubt that this exacerbated my issues. Only in the past three years or so, have I been able to get back to some sort of stability. I’ve still got plenty of issues, but with my steady breathing and balancing out my autonomic nervous system (stopping the dominance of fight-flight knee-jerk reactions), I have a chance to get myself back on track more quickly and with less wear-and-tear than before.

And it lets me rest, which is critical for my recovery — long-term and short-term.

So, today I’m taking advantage of the holiday and the extra time I have to rest. I’m taking a break, catching up on my sleep and reading, and I’m writing down the ideas that came to me when I wasn’t blogging regularly. Most of all, I’m just spending the day letting myself feel good, which doesn’t always come naturally to me. I’m taking the pressure off and just chillin’. There will be plenty of time later to “tear it up” again.

Taking a break for about a week

Leavin' on a jet plane...

I’m headed out of town for business travel in the morning, so I won’t be posting anything until after the 18th. I’m sure I’ll make some notes along the way and think more about my series about sports, concussion, and warfare, but since I’m going to be limited to the company laptop (which I can’t use for personal activities) and I’m going to be surrounded by people 23 1/2 hours of each day, it’s not likely I’ll find the time or space to post anything.

So, I’ll pause for a moment to really soak in the realization that a year ago, this time, I was freaking out about a business trip I was going on. That trip went extremely well, by any estimation, and I’ve had a number of other really good experiences along the line, as well, so this year it’s a very different scene than before.

And that’s pretty amazing. It’s so surreal, I almost can’t believe it… and I almost can’t believe how bent out of shape I used to get over things like this.

Now, it’s just business as usual. A HUGE change from how things were only 12 months ago.

Which leads me to say, yet again, that healing from the effects of TBI is very possible. It’s not always probable, and everyone has a different experience, but for me, the unimaginable has become the everyday. And where (in recent memory) I used to cower and shrink from every unexpected situation and run from anything new, now it’s a very different story.

And it’s good. I’m good.

This makes me all the more keenly aware of how much TBI affected me, this last time. Once upon a time, I would just get on a plane and go. Once upon a time, I would just pick up and take off on any old adventure. But after my mild traumatic brain injury, that all changed. And suddenly I was a hothouse flower who would shrivel and weep at the slightest thing.

God, I hate being that way. It makes me nuts. And while I can get that way when I’m not working at holding myself together, the thought that I’m no longer that way “by default” — that I once again have a choice about my experience — in every unusual situation, makes me extremely grateful for all the help I’ve received and the hope I’ve been given.

Yeah, things are good. Now I’ve gotta go pack.

Be well, folks – I’ll check in again when I’m back.

The radical mindfulness of the everyday

Nothing special... or maybe it is?

Some time back, I heard someone speaking about having sustained a pretty serious head injury, which left them without any memory or any awareness of who they were for about 24 hours. They had a bad accident, which pretty much reconfigured their face, and left their brain blank, when it came to knowing who they were or what they were doing far from home with a bunch of other researchers.

They said that right after their accident, they had no idea what their name was, where they were, who they were with, or what they were doing there. They were on a research trip with a bunch of other scientists, and their job was to collect data. But after the accident, all that changed.

Their amnesia lasted about 24 hours, and then all of a sudden, they were back. They said they believed that the thing which brought them back was paying extremely close attention to every detail about their experience.

The air they breathed.

The food they ate.

The sounds they heard.

The feeling of their body.

Every sensation that they encountered, they focused in on it with their whole might.

And a day later, they were back.

What strikes me about that story — and the person who told it is a nationally recognized leader in their field with an avid following — is that they plunged full-on into their life experience after their brain injury. And decades later, they are a thought-leader in their chosen domain.

Now, who can say if their mindfulness was the thing that restored both their memory and their awareness of who they were, but they were convinced that this “extreme mindfulness” approach made all the difference for them.

And so am I. I’ve been thinking a lot about that story, since I first heard it several years ago, and I have been employing that approach more and more in my life. The principles behind it, as I think of them, are that when we engage our whole selves in our lives, noticing small details and really dwelling on our immediate experiences, we create new connections in our brains — new physical connections that really “fill in the blanks” for who we are. When we approach our lives as actively involved individuals, and we learn as we go (from trial and error, or just thinking things through very carefully ahead of time), we “build out” parts of our brains that may have been neglected before, or that may have gotten hurt in that accident. When we try new things, eat new foods, think new thoughts — and do it repeatedly — we lay in new connections that strengthen with repetition. We acclimate ourselves to the new life we have, and we find ourselves better and better able to function in this new way. (Or we discover that that new way really isn’t for us, and we go off to find another way.)

The process is gradual, but it can also jump us ahead in leaps and bounds, when we least expect it. That’s been my experience, anyway. But it’s a process. And my experience has been that it is cumulative and accumulative. It’s pretty cool.

The biggest threat to this process, from what I can see in my own life, is fear. Fear keeps us from engaging with our lives. It keeps us from getting involved. It keeps us at a “safe” distance, and it may make us feel smart (for detecting danger) or safe (for avoiding situations that we think are dangerous), but it doesn’t help our brains very much. If anything, it robs us of the chance to rebuild what we need to rebuild. It keeps us from building new connections, and it keeps us from developing as truly human beings. I know a number of people who are extremely fearful, and over the past several decades that I’ve known them, I’ve watched their lives become smaller and smaller, as my own has broadened. And it makes me sad to see it.

It’s also a good lesson for me. Every time I see them making choices that have to do with fear, instead of curiosity, I am reminded of the kind of life I do not want to have. And I start to make different choices of my own.

Now, fear can be a tricky thing. Some is good to have — fearless animals tend to be short-lived, and I want to live a long time. But having it run your life… that’s no good. And from personal experience — having had fear run my life for many, many years, when TBI-caused anxiety was wreaking havoc with my soul — I can say it’s no darned fun. And it keeps you from recovering what you need to get back.

Looking back at my life over the past 40+ years, I can see a direct correlation between the traumatic brain injuries/concussions I experienced, and a growing anxiety… which eventually built into a nasty case of post-traumatic stress. I was so wired all the time with anxiety and stress over constant fight-flight situations (that were induced by my TBI-related anxiety) that even though I wasn’t in immediate danger a lot of times, I felt like I was. I was often completely taken over by fear, which kept me from developing as a person and kept me from recovering from my injuries.

But since I’ve been actively dealing with the anxiety and agitation… and now that I understand the actual nature of my issues (they are neurological, not psycho-spiritual)… it’s taken the edge off my experience in ways that simply amaze me. And it makes it possible for me to engage fully with my life, day after day, as an actual human being, not a shell of the person I once was.

Active mindfulness is actually pretty radical, if you think about it. When I say “radical” I mean “Relating to or affecting the fundamental nature of something; far-reaching or thorough.” I mean, it turns me 180 degrees in a different direction from where I’m going when I’m stuck in fear. Diving into my life experiences, and not holding back because “there’s something wrong with me” has proven utterly transformational for my life, my relationships, my sense of self, and my sense of well-being.

And the weird thing is, even though to this day I don’t feel like I’m the person I used to be, and I have this nagging sense that something about me is “missing”… that doesn’t matter to me nearly as much as it used to. I can accept that I’ve changed, that my life has changed, that I’ve lost the things I’ve lost. Because now I realize that I’m actually gaining a lot of things I didn’t have before. I have a much deeper and higher-quality of everyday experience, each and every day. And I am involved in my life and my relationships and my work on a far deeper level than I can ever remember being, before I got help for my TBI issues. Life is a series of losses and gains, and when I can accept that and get on with the gaining, instead of getting stuck in the losses, that only helps.

Now, thinking about it, I am struck by how this approach — total, full-on engagement with the world around them — can compliment the directions we’re receiving from doctors and athletic trainers, to rest the brain completely while recovering from concussion.

I am NOT a doctor. Nor am I an athletic trainer. I have not received their level of education and training, and in no way can I compare myself to their expertise or even rival their formal knowledge. But I really believe, based on what I’ve read, that the concept of total rest after a brain injury is 100% right, and I often wonder what might have happened, had I actually taken the time to rest after my injuries, to give myself time to heal and give my brain a chance to sort itself out.

Now, each and every person is different. Each and every brain injury is different. There is so much we don’t know. And I don’t know any of the other details of this radically mindful post-TBI individual’s full experience that might shed light on why they came back from their amnesia so quickly, and why they lived out such a high-achieving life. What we do know is that there is still a whole lot of uncharted waters out there, when it comes to what-to-do-about-concussion/brain-injury, and we may just find different ways of approaching the injury, based on the individual and their own scenarios.

I really support the wisdom of pulling student athletes from play and keeping them out for extended periods of time. I also believe the science behind the biochemical cascade that happens when concussion takes place. And I only wish that the NFL and NHL and student sports leagues would pay attention to what we now know about concussion and traumatic brain injury, and take full responsibility for what their sponsored activities make possible — damaging, potentially catastrophic traumatic brain injury.

At the same time, I think that something more needs to follow the initial resting period. We need to manage concussions not only immediately after the injury, but over the long term. We need to find ways to help the injured — and that includes veterans returning with TBI, as well as countless other individuals who experience brain injury each year — re-engage fully with their lives, on a whole new level. Experiencing life as it comes up, learning to taste and feel and see and hear all that is around us, each and every day, can help the brain create whole new connections and pathways that “fill in the blanks” that TBI can leave. It might not fix the “busted parts” 100%, but it can create new parts and new connections, where none previously existed. And in the creation of these new parts, we can turn our minds from focusing on what we don’t have, to focusing on what we can have.

I hope that others who have been concussed or brain-injured can find this same kind of experience, that they can find ways to overcome the anxiety and agitation that wreak havoc with our minds and our brains and our spirits. And I hope the same for those who live with them and care for/about them. Beyond the initial recovery period, there is a whole world to discover out there — a world that I found severely limited by my rigid thinking and my inflexible attitudes, which were really cemented in place by anxiety and agitation.

Most of all, I hope that we can all keep open minds when it comes to what will work for individuals, that we can all learn about what has worked for people who have “been there”… and continue to look beyond the initial mechanics of concussion and traumatic brain injury, to seek out longer-term approaches to restoring life after TBI. Standard protocols of immediate response and treatment are very important, in my opinion. And so is innovation and an open mind — as well as a truly scientific approach that keeps the doors of the mind slightly ajar when it comes to alternatives and workable approaches.

In the end, we have to keep learning – fortunately, we’ve got tons of opportunity to do exactly that.

Back to basics — again

Light it up

I think I’ve written about this in the past… how I was getting back to basics, after having gotten pulled off base by all kinds of busy-ness and so forth. Well, it’s time to hit “re-set” again, and get back to the fundamentals that keep me going in life. In the past months, I have really gotten off-track with just the most basic stuff — taking care of myself physically, which is the cornerstone of my daily success (or lack thereof). I guess the whole work situation got to me, and I got it in my head that, despite doing all I could to better myself, I still got caught up in the machinery of the Overlords,  backed into a proverbial corner by the economy and my attachment to my work… and no matter what I did, I couldn’t save myself.

They still took a good thing and made it pretty awful. It’s been years in the making, and I was a fool to not see it coming. I was so caught up in serving the common good, that I lost sight of the fact that the common good is owned — lock, stock and barrel — by individuals who are driven by such an all-consuming greed and hunger for power and the need to be “players” that it’s driven all sense from their minds. They are on a certain course, and they aren’t straying. No how, no way, and here I am, standing here looking like a jerk, bemoaning a fate that I backed myself into, while thinking happy thoughts about all the “possibilities” of this new world I’ve been shunted into.

And here I thought I was doing so well, when just the opposite of what I wanted was coming up behind me…

I tried. I really tried. But it didn’t work out. So, why bother?

Yeah, I’ve really been stuck on the pity-pot for days, now. And it’s getting tiresome. It’s so tempting, of course, to sit around and feel bad about how things have turned out, to get down on myself and tell myself, “Oh, what’s the use? I’m a lost cause with no real hope of redemption. I might as well just pack it in, make myself comfortable, and get used to sucking it up and swallowing my pride and all those other things that make my life marginally tolerable in the face of truly annoying circumstances.”

But that isn’t really like me. Even when I’m over-tired, like I have been, there’s still a spark that keeps lit, no matter what. It may get dulled by fatigue and agitation and chronic pain and just being so worn out from all the daily things I have to navigate and deal with — without a whole lot of help, on top of it — but it’s still there. I just need to remember that and find it again. And remember that wherever I am at that certain point in time, if I’m not in a good space, it’s probably because I’ve forgotten the most important thing of all:

It ain’t over, till it’s over. And it ain’t over yet.

As Thomas Edison said, “I have not failed, I’ve just found 10,000 ways that won’t work.” I think I’ll print that out and put it up where I can see it regularly. ‘Cause someone like me, with so much on their mind, and so many dreams, and so much going on, has to remember that mindset on a regular basis. Gotta stay focused, gotta stay positive. Gotta stay on track and on point.

How to do it? Get the basics in place and keep them there.

• Eat right, eat regularly. None of this late-night snacking. Gotta find another alternative to the junk food snacks that keep me going in the afternoon.
• Get good rest. Don’t just hang around in front of the television till I can’t keep my eyes open anymore.
• And exercise regularly — and I mean daily, not just intermittently throughout the week. Get my 15 minutes in on the exercise bike, followed by 10 minutes of lifting — either light or heavy. 25 minutes of exercise each morning is not a waste of time — it’s an investment, and it’s one I cannot afford to do without.  Believe me, I’ve tried. It started several months ago, with me backing off on the exercise… taking a break from the dumbells, either going more easy on the bike or not getting on the bike at all… and eventually getting to the point where I wasn’t doing any exercise at all in the morning, just having my breakfast, sitting down to check my email, then getting in the car and going to work and sitting all day some more. Then coming home and yes, sitting around yet some more.

Too much sitting. Not enough discipline. Not enough movement. And boy, have I felt it. My knees are starting to give me problems, and my moods are problematic. I’ve gained weight, too, which is bothering me — more because I just don’t feel as good as I used to, than out of vanity or anything like that. I just haven’t felt good, and it’s coincided with my lack of exercise, lack of discipline, lack of involvement in my own life.

Just living like a victim — which isn’t like me at all. I let myself slack off… and as I’ve spent less and less time focusing on my physical fitness, my thinking has become clouded, my head feels fuzzier than it has in a long time, and I have slowly lost the stamina I had built up. Not good.

And when I think about it, I realize that there’s more to it than my current job situation. I’ve also been listening to other people way too much. People who talk about how bad things are, how bad the economy is, how bad politics are, how bad off this country is. It’s all bad-bad-bad, everywhere I look, and everyone seems to be so unhappy and discontent and determined to blame others for their situation.

The only thing is, when I think about things, I can’t remember things ever being 100% great in my life. It was always something with me — always some real problem going on, always some drama, always some issue that had to be dealt with. Even when I had a “great job”, it was often a daily struggle to get things done and work with all the people around me, in the face of organizational upheavals and countless problems that came up in the course of each day.

And even when I bought my house and moved in, about 10 years ago, there were all sorts of problems that needed to be dealt with — a squirrel infestation in the attic, the adjustment to mortgage payments, the increased stress of property upkeep, the new neighborhood, the new neighbors (some of whom turned out to be aggressive, obnoxious a-holes)… I could come up with a complete list of all the things that were wrong all throughout my life, many of them totally legitimate. And lots of people I know would probably look at the list and say, “Yeah, that was pretty wrong.”

The thing is, looking back, I can see plenty of things that were right at those times. I was often just so focused on the wrong-ness that I missed the rightness — till later. And that’s how I feel things are at this point in this country. The Occupy folks are setting up all over this country, demanding some sort of change, and the 99% folks are making people aware of how bad things are for some people, these days. There’s a lot of upheaval going on, and there’s a lot of pain and fear and anxiety that are bringing out the worst in people. I think about all the cops who are being told to do such-and-such, in order to keep their jobs, and the things they’re going may or may not be what they really want to do, or what they would do, under different economic circumstances. I’m not excusing the behavior of police officers who pepper spray 80-year-old retired schoolteachers or hold people down while they shoot chemicals into people’s open mouths, but something tells me this is not what normal people do under normal circumstances, and I don’t believe for a moment that all cops are inclined to do such things. If anything, I attribute a fair amount of this to stress and the danger of them losing their jobs. Things are so tight — how can you defy your boss, when you’re on the verge of ruin, yourself? That kind of fear — and the fear for your family and your loved-ones whom you’re supporting — will make people do things that are way out of character.

Again, I’m NOT apologizing for the behaviors of pepper-spray-happy cops (and Wal-Mart shoppers). Nor am I apologizing for violence and destruction by protesting individuals. I’m NOT excusing any of it. I’m trying to understand the underlying causes, because I believe everything happens for a reason — and you can’t change anything if you don’t know why things are happening.

What I am trying to say — although it’s probably going to get buried or misconstrued in all the back-and-forth arguing — is that despite how bad things may look on the surface, there is always something positive happening somewhere. It may be a miniscule little shred of goodness, but it’s there somewhere. And for all the upheaval and hurt and protest and what-not, I think it would be even worse, if people didn’t speak up and speak out, if they were left all alone by themselves to struggle in silence and isolation, left to die unacknowledged and unseen. Tons of people are falling between the cracks and dying in isolation, pain and misery… which absolutely sucks. But there are also many people who are telling their stories and getting at least recognition (if not support) for what they are going through.

It’s a mix. There’s never just one side of things. And sometimes it takes a god-awful set of circumstances to jolt us out of our trance-like state of just putting up with whatever is there, because well, that’s just how things are, and we’re too tired to do anything about it. Sometimes it takes a really crappy political shift at work to wake a person up and get them to see that they need to make some real changes in their life. It’s certainly forcing my hand, and it’s forcing me to rethink my whole “career strategy” and look deeper into what I’m looking for — and I can do that now, because I actually have a job, and that job situation is motivating me to find out what else is possible that I hadn’t yet considered or worked up the courage to do.

It’s also motivating me to tend to my most basic needs — physical fitness that makes a good foundation for my thinking and my planning. When I don’t take care of that basic stuff, none of the other stuff has a firm footing, and I start to slide off the tracks. Not good at all.

So, that being said, it’s time for me to get myself in gear and get on with my day. Spend some time taking care of chores, get out in the day a little bit and clean up the garage, which is full of fall yardwork tools and implements, all strewn around ’cause I was in a rush last weekend… and make sure to get some rest this afternoon. I can’t beat myself up for having let myself get to this place. I screwed up, I know it, and now I’m getting myself back on track.

No one can stop me from having the life I truly desire, but me. And it’s time I got out of my own way.

Because rust never sleeps

 

Tea catastrophe averted

 

I got a good lesson this morning. I managed to sleep in  till 8:15, with my earplugs firmly wedged in my ears and extra curtains pulled across the windows to block out the light. Even the birds that fill the trees around my house, clamoring for attention from each other and battling for position at the bird feeder first thing in the morning didn’t wake me up, as they often do, ’round about 6 a.m.

I’ve been feeling progressively more under the weather over the past few days, with my balance getting worse and worse and the headache starting up again. Work has been really good – very rewarding and satisfying. But it’s taken a toll, and when I got up this morning — without doing my usual breathing exercise (I did that at 4 a.m. when I was trying to get back to sleep) — I was feeling wobbly and out of it. I had to lean against the walls as I walked to the bathroom, and while I brushed my teeth, I had to prop myself up with one hand firmly on the sink counter.

I managed to get downstairs in one piece, and I made my breakfast slowly, deliberately. I took my time with it, taking care to not move too quickly and put myself off balance. In the past, when I was still dealing with the early years after my last injury, being off balance would send me into a panic and it would throw me off for the whole day, even before the day began. But since I’ve been making important changes in my daily life — including regular exercise — the panic has subsided considerably, and I’ve learned how to handle the sense of teetering on the edge of collapse without having my psyche collapse, too.

And that’s important.

So, anyway, after I had my breakfast, I decided to spend my day reading and writing and checking in with myself. The weather has been pretty wet, lately, and I can’t do much outdoor work. Plus, I’m not feeling well, and I would love to just spend the day reading, studying, and writing. Taking it easy, instead of taking care of everybody else’s business. I put some water in the electric kettle and fixed myself some fruit with crackers and goat cheese and went up to my study to settle in.

After a little bit, I realized I’d forgotten my trusty writing cardigan, and I went back downstairs to get it from the kitchen. While standing in the kitchen, looking around to see if there was anything else I’d forgotten, I heard an odd hissing sound. I went over to the kitchen counter and found my tea mug with a dry tea bag in it, and beside it was the electric kettle, hissing away, nearly all the water boiled out of it.

Now, the way the kettle has always worked in the past, is that when it gets low on water or reaches a certain temperature, it shuts off. This time, it did not shut off. So, I did. And when I looked closely at the heating element, it was showing signs of rust — perhaps from the intense oxidation from the coils evaporating off the water?

I kind of went into a tailspin about this. Yes, I know my alarm was disproportionate to the situation, but I got seriously upset by this and I started to beat myself up over having put water on and then walked away. I won’t write all the things that went through my head, because they are not the kinds of things I care to archive for posterity. Suffice it to say, for a few minutes this morning, I was not my best friend.

But then I realized I was pretty off the charts with my distress — how much would a replacement kettle cost? not very much, really — and it was more about me being absentminded and not paying close enough attention … no to mention feeling ill and “off” this morning. So I was wasting a lot of precious time getting bent out of shape over this. It’s turned out to be a beautiful fall day, and I have given myself permission to take time off to take care of myself. Why should I waste my time and energy beating myself up over a simple case of absent-mindedness that really anybody could have done, too?

Okay, so I established that it wasn’t worth wrecking myself over this oversight. And I realized that this electric kettle is not going to automatically turn off whenever it’s low on water, as I assumed. I would just get in the habit of A) putting more water in the kettle and B) not leaving the kitchen till it’s done heating the water, which takes all of maybe 30-60 seconds. Simple solution, right?

Well, what came up next was the burning question (and yes, I realize this sounds a bit neurotic, but I am not feeling well this morning) about what to do with the “extra” water that I wasn’t using for my tea? See, when I pour water in, I pour exactly as much as I need, so when it’s hot, I don’t have to check the level of liquid in my mug. I just know that I have exactly as much water as I need. If I heat more than I need, what will I do with the extra?

This was the hotly burning question in my fuzzy brain this morning (in the moment it seemed extremely important). I was all up in my head about the evils of waste and getting frantic about not having the exact amount of water I needed in the kettle, and having to gauge how much I was pouring in… and so on.

Ugh.

Then it occurred to me that having the extra water would come in handy for clearing the drain. I’ve been having some problems with the kitchen sink drain getting sluggish. My fix for it is to pour boiling hot water down, and that often works. So, this “problem” is actually no problem at all — in fact, it solves some problems, namely:

• I need to slow down more in the morning, and this will help me do it.
• I need to heat more water in the kettle, so it doesn’t fry the coils, and this will let me do that.
• I need to periodically clear the drain with boiling water, and this will let me clear it daily, so the buildup doesn’t accumulate and become a bigger problem down the line.

So, there’s really no problem at all. Not anymore. But this morning, for about 15 minutes, I was going into a tailspin that threatened to wreck my entire day and set me down a spiraling path of upset — at the innocent electric kettle and at myself for getting so bent out of shape.

The electric kettle is forgiven, and so am I. I know full well that I am off balance, not feeling well, and I am spending an awful lot of cognitive energy just trying to keep myself vertical and not get hurt. I can cut myself a break, and just get on with my day and my recovery from the past week+ of hectic activity.

I’d better cut myself a break. Because rust never sleeps.

Neil Young reminds me of that constantly, while I’m driving to and from work. For some reason, radio stations in my area keep playing his music, and “rust never sleeps” is often what I hear him singing about. My, my,  hey, hey… It’s better to burn out, than to fade away… And this gets me thinking. Especially in the autumn, when the effusive growth of summer is giving way to frosts and withering and deadening, and the cycle of life turns to a cycle of death, my thoughts become, well, a little maudlin. The change of the season gets me to wondering “what’s it all about?” and “is this all there is?” and all manner of existentially angst-y ruminations. And my brain starts to perseverate and lock onto misperceptions and misconceptions and any number of irregular reasons to doubt my ability to live effectively in the world.

Some days, I suspect it’s due to the way my life turned in the course of my concussion-punctuated years. Each injury left a mark on me — a “ding” or two or three in the fuselage of my vehicle that didn’t exactly ground me, but kept me from achieving the heights I might otherwise have reached. I don’t want to blame the brain injuries for my ills — certainly, they have played a part, but they’re not the only reason I’ve had difficulties.

More than the traumatic brain injuries, in fact, I believe that the aftermath, the reactions, the later reactions of others and myself (which were based largely on ignorance about what brain injury does to the personality) and the meanings I gave to those reactions, had the biggest impact. And the time when I was actually recovering from the physical effects, I was sinking into a psychological morass of confusion, dread, insecurity, and the conviction that this temporary situation was permanent, totally screwed me up. After my injuries, my neuroplastic, adaptable brain was on the mend and finding new ways of doing the things I wanted to do, but because those new ways were different from the old ways — and therefore threatening and alarming to me — I discounted them and told myself they were WRONG and I should not be doing things the way I was doing them.

I had it in my head that the roundabout way I learned was Wrong.

I had it in my head that the way I communicated with people was Wrong.

I had it in my head that the way I structured my daily life — much more downtime than most people I knew — was Wrong.

I had it in my head that the choices I made about my social life — who I would and would not interact with — were Wrong.

I had it in my head that the choices I made about my domestic life — not having children and not officially getting married until 15 years into the settled, intricately entwined relationship — were Wrong.

Now, to be fair, there was an awful lot of social pressure to adhere to certain ways of doing things, so I had plenty of reinforcement for judging myself and my choices. And the rigidity of my upbringing didn’t help. But I suspect that the rigidity of my parents and wider social circles wasn’t the only reason I was so locked in, and so quick to judge myself. Indeed, I believe that the head injuries I sustained as a young kid (when I was about 4, then again when I was 7 and 8 ) predisposed me to an intense rigidity that locked out any alternatives to routines or “standard issue” behaviors.

The Brain Injury Association of New York State has a great little tutorial on Flexibility Versus Rigidity In Thinking And Behavior that I really like. (They’ve got a bunch of great material there, especially for teachers and parents of brain-injured kids.)

Here’s a snippet from the tutorial:

WHY IS RIGIDITY/INFLEXIBILITY IMPORTANT FOR SOME STUDENTS AFTER TBI?

Students with TBI or other neurological conditions sometimes demonstrate extreme forms of rigidity or inflexibility. Rigidity/inflexibility is often associated with damage to the frontal lobes, the most common site of injury in TBI. Therefore, some degree of inflexibility is common in students with TBI. This may manifest itself as difficulty (1) making transitions during the school day (e.g., from lunch or gym back to classroom work), (2) tolerating changes in schedules or everyday routines, (3) adjusting to changes in staff, (4) ending an intense emotional feeling, and the like. In extreme cases, a transition as apparently simple as from sitting to standing may be difficult and cause stress.

Related but not identical to inflexibility is the phenomenon of perseveration. Perseveration is a possible result of neurologic impairment and is characterized by continuation of the same behavior or thought or words or emotions after the reason for the behavior, thought, word, or emotion has passed or the thought or behavior is no longer appropriate to the situation. . For example, a student may remain focused on a given emotional behavior state long after the reason for that state has been forgotten.

This pretty much describes me when I was a kid, though today I’d have to say that emotional rigidity and perseveration is much more of an issue than cognitive. Cognitively, I can move on. But emotionally, I’m still stuck. I think that getting out in the world and holding down jobs and having gotten positive reinforcement in work environments has helped me cognitively. I’ve been able to really reap great rewards from using my head, and that’s encouraged flexibility and creativity. Emotionally, though, I get jammed up and stuck. That’s where I get rusty — stuck in place and wedged into an old pattern that doesn’t serve me or the people around me.

No, rust never sleeps. So, what do I do? Do I drive myself onward-onward-onward, in hopes of burning out before I fade away? Do I race at top speed through life and damn the torpedoes?

Um… No. Racing around and pushing myself are the very things that encourage rust. Like the super-heated coils in electric kettle caused the metal to rust, so does my super-heated life cause my system to lock up and show signs of wear. Maybe not in Neil Young’s case, but in my case, pushing for burnout is a sure route to rust. And I don’t have all the time in the world — I’m not getting any younger, and my window of non-fatigued time is significantly less than most people’s I know — so I just don’t have a lot of time to spare, cleaning up after myself when I crash and burn.

That’s no way to live.

What to do?

This is the eternal question, and it keeps coming around with me, no matter how much time I put between myself and my injuries. My first TBI probably happened when I was about 4 years old. And there were two more when I was 7 and 8 years old. More came over the years, including sports concussions and car accident mTBIs, for a total of at least nine separate instances of head injuries that involved some level of disruption of consciousness, followed by cognitive, behavioral, and physical problems.  I never got help for any of them, until about 3 years ago — just a lot of headaches (literally and figuratively) — and only in the past 3 years have I started to systematically and mindfully approach my issues with a focused desire to overcome them.

I’ve learned a lot about how to deal with the basic things — get my exercise regularly, eat right, get enough sleep, and check in with my neuropsych on a regular basis. But as the basic issues get resolved, the “higher level” questions emerge — as in, how to make the most of what life I have left, so that I can have the best life possible, whenever possible?

Ironically, the answer to this question has gone hand-in-hand with the answers to my most basic human needs. The answer is to just slow down and pay attention. For someone who is as driven as I am, it’s a tall order, and not that easy to do. But you know what? When I not only slow down but also pay very close attention to what I’m doing with myself and my life and my choices, many of my TBI related issues resolve.

When I slow down and pay attention to my physical fitness, my joint pain and headaches subside considerably.

When I slow down and pay attention to what people are saying to me, the problems I have with understanding and following clear up considerably.

When I quit going 150 miles per hour through every single day and pay attention to what I eat and how rested I am, my need to pump myself full of adrenaline and push past all sensible limits becomes far less pronounced.

Now, slowing down and paying attention is the sort of thing I’ve had to learn from scratch. A big driver behind my rushing is a constant low-level panic that simmers in my gut, day in and day out. It’s that constant restlessness, the constant agitation that comes with TBI. It’s my brain working overtime trying to find its way through the tangled networks that have developed over the years. It’s my body’s reaction to the intense energy needs of my very-active brain, and the low fatigue threshold I have.

Slowing down and paying attention has been closely connected with my exercise routine, taking the edge off my stress, finding outlets for the nervous energy, and clearing out the biochemical sludge that builds up after countless experiences of surprise/shock/dismay/confusion that come at me in the course of each day, when the things I expect to happen … just don’t… and I need to immediately adjust and move in a different direction to get where I’m going.

That surprise/shock/dismay/confusion is an ongoing situation for me, and it may never change. I may find myself spending the rest of my life realizing I was all wrong about something and needing to find another way to think/act/be. But at least I have my exercise to help me clear out the chemistry of those micro-traumas. And I have an understanding of that bio-cognitive action that lets me cut myself a break and not get all bent out of shape — for extended periods of time — over things that are either directly attributable to my brain having gotten a bit banged up over the years… or are long since over and done.

But even if I do spend the rest of my born days troubleshooting these kinds of cycles of pseudo-drama, I always have my fall-back, my comfort in the midst of the storms — the knowledge that slowing down and paying close attention to what’s going on around me, with heightened awareness and intense curiosity, can and will pull me out of my funks, can and will restore me to some sense of myself, can and will connect me to my life once more, in ways that running around at top speed never can and never will.

Rust may never sleep, but I don’t need to run from it. Ultimately, it’s not the quantity of life that staves off the debilitating freeze, the rust. It’s the quality. Cooling the hot elements, adding more water than I “need”, and just sticking with my life in all its aspects till I find some peace, some resolution, and I can make my tea… that’s what does it for me.

Now, what can I pay attention to next?