Brain Injury and Lying – The Rest of the Story

Summary: Brain injury and lying can go hand-in-hand. First, there is confabulation, where the brain-injured individual genuinely thinks they are telling the truth, but they have their details confused. Second, there is the outright lying, which can come from experiencing an intensely emotional “catastrophic response” to situations which seem insurmountable. This is an account of how a good friend of mine changed from a basically honest person to a compulsive liar after experiencing several strokes.

It seems so innocent...
It seems so innocent…

I’d like to write this morning about a friend of mine who had several strokes back in 2007, a couple years after I had my last TBI. In fact, I’d say that working with them after their strokes really make me aware of brain injury issues… so that I could recognize and deal with my long-standing issues, at last.

I have known this individual for more than 20 years, and we’ve worked together on a number of occasions. We have common friends and we have similar senses of humor, so it’s been pretty easy to become – and stay – friends with this person. I am friendly with a lot of people and I make a lot of effort to really be a good person, but this particular friendship is closer than most others I have. This individual knows things about me that I wouldn’t tell most other people. And I know more about them than most others do.

The one exception to this is TBI. When they had their strokes – two of them, a week apart – in 2007, I was one of the few people who didn’t back away from them and run. I have actually known a number of people who had strokes and TBIs, and even before I knew that I myself had traumatic brain injury issues, I was willing and able to hang in there with them. So, this time was no different really. Different strokes for different folks, y’know? 😉 But when I was dealing with my TBI stuff, they just couldn’t deal with hearing about it. It was like they thought that it meant I couldn’t be there for them – and since I was one of their main supports after their strokes, the idea that I had neurological issues must have been pretty frightening for them.

Anyway, despite not getting any support from them, I really went out of my way to make time for this friend, to help them get back on their feet and rehabilitate. I have always been a firm believer that the human brain and body and spirit are incredibly plastic — and they can and will recover to a much greater degree than the “experts” believe, if you give them a chance, keep working, and don’t give up.

Working with this friend, we got them on a regular eating and sleeping routine… we got their weight down about 30 pounds… we managed, changed and then regulated their meds… we restored the strength and coordination in their right side… we got their speech and organization together… and – together – we got them back to functioning again.

We had to do it ourselves, and we had to do it alone. Because even though the MRI showed even more damage to their brain than “just” the strokes — they had other evidence of brain injuries that they couldn’t remember having — the doctors never gave them any indication that they needed any neurological or neuropsychological help, and their strokes weren’t “disabling” enough to warrant official rehab.

The impact was pretty noticeable to me, though. Their processing speed had really slowed down. They got confused a lot more than before. They had extreme emotional reactions to things that are sad or frustrating but aren’t exactly the catastrophes they thought they were. They had trouble keeping a conversation going. Their ability to multi-task was pretty much out the window. They basically went from having six gears, to having two, one of which was reverse, and when pressed to do more, they blew up or broke down in tears.  But since I’m not an “official” family member, there was only so much the doctors could offer me. Unfortunately, they and their family weren’t really emotionally or logistically able to deal with all of it. They just wanted things to go back to normal.

Out of everyone, I turned out to be the only one who was A) able to deal with the fact that they’d had several strokes (and evidence of previous TBI), and B) willing to do something about it. I’ve worked with relatives who had strokes and TBIs in the past, and this time was a repeat of those past experiences.

It took several years to get them back on track, but we did it.  And it was really gratifying to see. Plus, in the process of helping them, I realized I had my own set of issues I needed to deal with — which I’ve written about plenty in the past. Again, it’s taken me years to get back on track — more years than my friend, actually — but I’ve done it.

The only thing is, this friend of mine didn’t continue to take care of themself. They didn’t have the support of their family and friends, and I couldn’t be with them 24/7. One of the reasons that I’ve “gone off” on therapists in the past, was that I was being actively undermined by their friends who were therapists, who kept telling them that their issues had to with their terrible father, their hell-on-wheels mother, or other past relationship issues. When I tried to get support from these therapist friends, to deal with the neurological issues, I got either blank stares or active opposition, because they were so sure it was an emotional thing, not a neurological thing.

So, with family pressuring them to just get back to how things were, their friends telling them that they just needed to make peace with their parents, and me not being able to be around as much as I wanted to, because I had a lot of work commitments, they just went back to how things were before.

They stopped eating the right things and they stopped eating at regular hours.They started eating the wrong things, too — lots of sugar and fats and junk food, which has put the weight back on them — and is how they got into their situation to begin with. They let their sleeping schedule go all to hell, and by now they are pretty much nocturnal and they are rarely available during daylight hours.They stopped cleaning up after themself, and they live surrounded by piles of stuff that they can’t seem to figure out how to clear away.

It’s been really weird — it’s like they just got to a point where they decided, “Oh well, I’ve had some strokes, and I’m getting old like my parents did (my friend is  now in their 60s, and their parents both died in their late 60s/early 70s)…. so I really don’t feel like doing all this work anymore. I’m going to take a break, because I’m going to die pretty soon, anyway.

And it hasn’t had good consequences. A lot of times when I see them these days — which is more rarely than before, because I’m on a “real world” sleep-wake schedule — they look more and more like a “stroke victim” — and less and less like the person I know they are. I try to bring up their progress with them, but they always shut me down. I try to hint that they may want to take better care of themself, but they either start to yell at me, or they change the subject, or they start to cry. It’s that catastrophic response, for sure — a reaction that is just dripping with the emotion of fear and overwhelm.

Fear that there is something terribly wrong with them.

Fear that they are damaged beyond repair.

Fear that others will hate and look down on them because of the strokes.

Fear that they will never be “normal” again.

Fear that they’re going to die a horrible death and go to hell forever.

Fear that it is all TOO MUCH to handle.

So, even though I have seen changes in their behavior and their functionality, I am helpless to change any of it. I can’t even bring it up – not with them, not with their family, not with their friends. People tell me that I have no control over others, and that I should take care of myself first, but it is so painful to watch them do this to themself. Not only do they have physical and logistical issues, but there’s more.

There’s the lying.

I’ve written before about confabulation and how traumatic brain injury can mix things up in your head and make you think you’ve got it right, when you have it completely wrong. I have a had a long history, myself, of accidentally “lying” about things  — it wasn’t my intention to lie, and I didn’t actually think I was lying, but I had my facts all turned around… which looked a lot like lying. I still do it today — I miscalculate, or I get things turned around — but fortunately I have a lot of people around me who genuinely care about me and want to help, and they don’t hold it against me. So, the consequences are less, even if the problem persists.

I have seen confabulation happen with my friend, as well. They were so sure they had things exactly right… but they didn’t. Not even close. Over the past few years, however, I have seen their accounts turn into outright lies — some of them more extreme than others. They know they’re lying, but they either can’t seem to help themself or they just LIE, and then make excuses.

It’s getting really bad. On a number of levels.

First, there’s the routine lying to people about what they do with themself all day — they paint a picture that makes them look quite functional, when the opposite is true. They talk about doing things that they aren’t even close to doing — like running errands or working on important projects and going about their business like they’re “supposed to”. They’re just thinking about doing them, but they tell others that they actually have done them.

And then there’s the deeper sorts of lies — the adulterous affairs, where they aren’t only sneaking around behind their spouse’s back and flirting with people who seem intriguing, but they are actually having sex — a lot of it, and really wild stuff — with these adulterous interests, lying about it, getting hotel rooms, visiting the long-time family vacation spots with the object(s) of their adulterous affairs, and openly talking about their affairs with people who know both them and their spouse. I found out about it by accident, and I got a lot more details than I wanted to. I almost wish I’d never found out, to tell the truth.

And that’s a pretty extreme turn of affairs. Not only are they spending money that they (and their spouse) cannot afford to spend on hotels and meals and entertainment, but they are also doing it in plain view of people who know them and their spouse. But when I have confronted them about it, my friend has lied right to my face about what was going on. They have sworn – up – down – left – right – that there was nothing untoward happening, just a “close friendship”, and when I have pushed them, they claimed it was just for “emotional support”.

Right. Emotional support. Unfortunately, I know differently.

This, dear readers, is very out-of-character for my friend. For as long as I have known them, they have been stable and loving and committed to their spouse. And they’ve at least tried to be honest. Until the strokes. Since the strokes, and especially they stopped taking care of themself, their behavior has become so erratic, so chaotic, so extreme — with the cursing and laughing and crying and lying — that I frankly don’t want to be around them much. I can’t just abandon them, but it’s hard to be around it all. And when I try to bring this up and discuss with them, they just can’t hear anything about how their strokes have affected them. It’s too much. It’s just too much for them to handle. And they pitch headlong into yet another mother-of-all-catastrophic-reactions. Yelling, cursing, crying… and more lying.

Watching someone who used to be level-headed, strong, secure, and self-confident burst into tears or blow up in a rage or come up with some cockamamie fantastical version of “reality”, because you’ve drawn their attention to something that everyone else on the planet can see clearly… something that is really and truly wrecking their life (how long till their spouse finds out about the affair(s)?)… well, that’s a pretty bitter pill. Trying to reach out and help one of your best friends — only to have them freak out on you and become threatening… it’s a hard one.

And it’s complicated. There are a lot of factors in play. And I can understand why a lot of this happens. But the lying doesn’t help matters any. It’s one thing to confabulate, but outright telling a falsehood deliberately is something that doesn’t sit right with me.

It’s just wrong. And to see them do it so compulsively… that’s pretty hard to take. I am almost neurotic about telling the truth — I get myself in trouble all the time, because I’m not willing to lie to people. And when someone who matters this much to me just runs around lying through their teeth, left and right, to everyone — including their spouse — it really works on my nerves.

But when I look at this in terms of catastrophic reaction, it starts to make sense. It’s like there’s all this conflicting stuff rattling ’round in their head that they can’t make sense of, and it puts them on edge. They have a history of trauma, too, with a father AND a mother who were each a real piece of work, so that personal history has biochemically primed them to go into fight-flight over just about anything that looks like a threat. From what I’ve seen, they are geared towards a fight-flight response to life in general… and their blood sugar is out of whack, so that it’s making that fight-flight even worse, and every little uncertainty looks like an enormous THREAT!!!

So, being on edge, and having the perception that there are things that are too big for them to handle, and they’re not going to be able to handle them, and they are in DANGER because they can’t handle them… well, that sets up the perfect “petri dish” for growing lies. Because lying is the one (and only) way they can immediately cope with an imminent threat — which of course everything looks like, especially when a social situation calls for the kind of quick thinking they cannot do anymore.

When I look at this whole business through a neuropsychological “lens”, I can understand the reasons for their behavior. And bottom line, knowing what I know, I actually don’t blame them. Yes, they are an adult, and yes they are responsible for their actions, but this is a neurological condition, not a psychological or emotional one. I’m not letting them off the hook — lying is still wrong, and I am still very uncomfortable with it.

At the same time, I’m seeing the real reasons behind it. I’ve discussed this a few times with my neuropsych, and they propose that their brain might be experiencing further vascular damage, because not only do they have a history of strokes, but their blood sugar is on the diabetic side, as well, which can cause more vascular “insults”. And that’s a whole other ball of wax to deal with.

But still, the lying… I keep coming back to that. It’s really tough to watch, really hard to handle. One of my best friends is self-destructing before my very eyes, and I am helpless to do anything about it. All I can do, is learn from their actions and their mistakes, and do what I can to help them as best I can. To be honest, it motivates me to take even better care of myself and better manage my physical and neurological health, because I don’t want to end up like them. I have noticed myself lying at times, when I felt cornered and felt I couldn’t handle everything that was coming at me. That is something I DON’T want to make a habit of, and seeing my friend go through everything they’re going through, is lighting a fire under me to do better. To be better.

None of us has control over others, which is probably a good thing. But we do have control over ourselves, which is an even better thing.

Here’s to life – onward.

Management matters for all those issues

check smile
One thing at a time… works

Back to everyday life. Back to my schedule. I’m a big jet-lagged, but not horribly so, as I’ve been in the past. My Christmas present this year is having a full three weeks without crossing paths – in person – with the uber-boss who has it out for me. Keep moving, keep working, keep making that effort… without their interference. And always have a snappy reply when they write about something that is screwed up… because they interrupted me from fixing it with some other “priority” before.

I’m not the only one in our team who has attentional and distraction issues.

But I think I’m the only one who actively manages mine. The uber-boss? They have them big-time. But management strategies and remediation? Nowhere in sight.

Which reminds me, yet again, of how vital it is to manage those issues. I managed my issues aggressively and proactively while I was overseas, and it paid off in a very big way. Now I’m home again (home again, jiggedy-jog) and I need to keep up the good work. Take care of things right away, instead of sitting on them. Manage my time. Keep my energy up. And take breaks when I need to.

Life is a hell of a lot harder in fact than I tend to think it is. And I have a lot more difficulties than I tend to expect I will (with supposedly “simple” things). I am living in this different country, each and every day. Discovering how I am misunderstanding what’s being said… discovering that I need to listen more closely and ask more questions… discovering that I am not being clear, when I think I am at my clearest… and discovering that I am being perfectly clear, when I doubt myself the most. Each day, I walk out into a new world, with my memories telling me one thing, my sensations telling me another, and my hopes and dreams, recollections and regrets speaking different dialects all their own. And life goes on.

I step into the day, I step into the world. I may know what I think I “know” or I may not. I may be right about what I am convinced of, or I may be mistaken. I may have a clear head and a strong heart, only to find that my clarity and strength are working against me or are clear and strong about the wrong things.

In any case, life goes on. And so do I. It is early morning, and with the time change, my head feels like I am already halfway into my day, while my body knows it is still dark outside. Head and heart and body and spirit all have a chance to align in the next two weeks, before the Christmas week activities begin. On it goes. Today I make the most of what I have and what I can.

On it goes.

Broken body, broken mind

Source: freefoto.com

More than ever before, I’m convinced (and riding the bandwagon around the square, beating on my drum) that the body and mind are so closely intertwined, that you cannot possibly separate out the two.

You take care of the body, and the brain will benefit. The mind will benefit, too. I differentiate between the mind and the brain because I believe (like others) that the biological, physiological organ of the brain is just one part of what makes up the mind. When you take care of the body, the brain benefits. And when the brain benefits, the mind has something to work with.

Body-brain-mind connections matter. They have such a profound impact on our health — and our illness. That goes for mental health. It goes for TBI recovery. It goes for effective and lasting healing for PTSD. If you leave you body out of the equation, while trying to fix your brain, your mind may have a hell of a time getting back on track and up to speed.

Now, don’t get me wrong. I don’t advocate that everyone who’s struggling with mental health issues, TBI, and/or PTSD run out and join a gym and get ultra-ripped. I’m not saying that you have to become a competitive athlete or reduce your body mass to 5% (which might be physically unsafe, in any case – our bodies need fat). And I’m not saying that if you’re in poor physical condition, you’re going to be a vegetable.

I am saying that exercise, when done carefully and regularly, can and will benefit not only your body but also your brain and your mind. It’s not blind faith I’m falling back on — it’s scientific fact, documented research, and personal experience. It doesn’t have to be torture, it doesn’t have to involve pain. It can be as pleasant as a walk on the beach with a loved one and your dogs, or perhaps a swim in a beautiful lake. It can be as everyday as taking the stairs three flights up, instead of taking the elevator. And it can be as invigorating as a game of touch football with your friends on Thanksgiving Day.

But if it’s not at all a part of your life, and you’re dealing with the challenges of TBI and/or PTSD, I’d hazard to say that your row is going to be a bit harder to hoe.

By now there is so much documented evidence that exercise and aerobic movement aids the brain, that it’s impossible to ignore. And it would be negligent of me to not beat on my exercise! drum, if I genuinely want to help people overcome the challenges of TBI (which I do).

The fact that exercise is such a simple thing for everyone to get — even in moderate amounts — makes it one of the best-kept secrets of TBI recovery. It’s so secret, even the top experts make passing reference to it, but aren’t nearly as passionate about it as, say, the folks at the Concussion Clinic at University at Buffalo. Watch the “Sportsnet Connected” – UB’s Post Concussion Syndrome Treatment Program for some very exciting developments.

For all the talk about TBI and PTSD among veterans, nowhere do I hear anyone talking about how soldiers returning from Iraq and Afgahnistan can help themselves with exercise. The VA may not have the proper pieces in place for highly effective diagnosis and treatment, and they may be discharging soldiers with inaccurate “personality disorder” diagnoses, but the one thing I see time and time again, when I look at YouTube videos of soldiers training, is gym and exercise equipment. Even gyms built in shacks on the sides of mountains in a godforsaken country far, far from home.

This puzzles me. Why would a treatment so effective and so familiar and so self-directed not be promoted and plugged (especially for soldiers), till everyone is sick of talking about it? Maybe it’s “too easy” and people think that it’s something that’s “extra” in addition to meds and/or directed therapies. Maybe it requires “too much” consistency and people don’t know how to work up the motivation to do it regularly enough to make a difference. Maybe the VA didn’t get the memo about U@B’s success stories. Maybe veterans are waiting for someone else to initiate treatment and get them on the right path.

It’s complicated, of course. I suspect it may also have to do with the professional interests and personal makeup of the top experts. After all, if earning your bread and butter (not to mention your reputation) comes from the control of information and the dispensing of advice and assistance under strictly controlled and controllable circumstances (like your office or a rehab facility), and you feel your professional position is threatened (or you may lose clients to outside forces), you don’t necessarily have a deep-seated incentive to encourage people to do simple, common-sense activities on their own (which provide tremendous benefits without requiring insurance billing codes).

Plus, if you’re a person who’s made your mark in the world sitting at a desk or standing at a podium, and you don’t have a real focus on physical fitness in your own life, why would you even think to recommend exercise to your clients/patients? The personal element to this — i.e., non-athletic individuals (who may have gotten into science and medicine because they sucked at sports) who have an aversion to exercise — should be factored in.

Plus, the focus on the brain and psychology and “mind over matter” that pervades Western science probably hasn’t helped us appreciate the role of the body in the functioning of our brains and minds.

Personally, I don’t have those sorts of conflicts of interest or an individual bias against exercise. Quite the contrary. I love to move in coordinated and sport-like ways, and I’ve got nothing to lose by telling everyone I encounter (or who reads this blog) that exercise can help heal what’s been hurt. And the more I think about it, and the more I use regular exercise in my own recovery, the more passionate (even zealous) I become. Each and every day, this flame burns a little brighter in my belly.

To say that exercising regularly changed my life for the better would be an understatement.  Once I started working out (very lightly and low-impact) each morning before I got started with my day, my anxiety level almost immediately began to decrease. Less anxiety meant less agitation, less temper flares, less acting out, less losing it over stupid shit. It has meant that my spouse can now be in the same room with me for extended periods of time. A year ago, that wasn’t the case. It has meant that I can start out my day without two or three private melt-downs that used to deplete me daily and leave me feeling broken and wrecked even before I left the house to go to work. It has meant that my constant headaches have subsided and my aches and pains which followed me everywhere and never totally went away, did in fact calm down. They’re not gone completely 100% of the time, but they are generally much less intense, and they don’t stop me from living my life, like they used to.

To say that my life between my fall in 2004 and my starting regular exercise in 2009 was getting progressively worse would also be an understatement. All that agitation, that anxiety, and the unstoppable extremes of panic and fight-flight-freeze gushing through my system were tearing the hell out of me. It was more than “just” TBI. It was (I believe) also a sharply spiking case of PTSD that arose from the constant “micro-traumas” of my TBI-addled experience, and it was destroying my life.

My brain was broken, and my mind was, too. In no small part because my body was broken in ways that no one could see.

How frustrating it was. I was trying like crazy to figure things out… totally fogged from my messed-up wiring, all disconnected and confabulated, and cognitively impaired by the daze of biochemical gunk that built up in my system.

It was like driving down a dark, unfamiliar road that’s full of potholes that I kept hitting, with the inside of my windshield fogged up.

Source: stoutandbitter

But then I started exercising. And you know what? Everything started to get clearer. Getting regular exercise each day was like taking a paper towel and wiping away the fog inside the glass. The road was still dark, and there were still potholes, but as long as I kept the inside of my windshield clear, I had a fighting chance. And slowly but surely, the sun started to come up.

Source: Kate Joseph

The road wasn’t particularly well-paved, and there were still potholes, but I could see them, at last, and I could adjust to my circumstances. As long as I was all jacked up on cortisol and adrenaline, I was S.O.L. and hurting from it. But when I started to clear that crap out of my system, I at last had a fighting chance to get on with my life.

My feeling about exercise are similar to feelings among my relatives about being born-again religious converts. There’s something so invigorating, so life-giving about this “new” discovery, that we feel ourselves transformed. And in a way, exercise has become a kind of spiritual practice for me. It gives me new life each and every morning, and even on those days when I’m not feeling as moved as other times, I still recognize the worth and value of this practice.

I would go so far as to say that exercise comes about as close to a “magic bullet” for TBI/concussion recovery, as anything I’ve come across. More and more experience and research is bearing that out, and plenty of TBI/PTSD survivors will agree. And the best part is, it not only strengthens the body and the brain, but it also gets you off the couch and/or out of the house and can get you into the company of other people where you’re less isolated, and you can interact with them in a structured context. TBI and PTSD can be terribly isolating. Having structured physical activity to get you up and out, and also provide a way to control your own social interactions is helpful in so many ways.

Out for a walk? You’re not only giving your veins and arteries and lungs and lymphatic system a much-needed boost, but you can also encounter people along the way with whom you can chat. Having trouble understanding what people are saying to you and following the conversation? You can excuse yourself and walk on, and no one will think anything of it. Feeling bad because you had trouble with the interaction? You can walk it off.

It’s what I do.

And the results have been amazing. (Obviously, not everyone has the same experience, and you’ll certainly have your own, but this is mine.) After hiding myself away for years, I’m back in the swing of things, taking care of what’s in front of me. Granted, I have my down days, and motivation is still a problem with me, but feeling as good as I do (aches and pains notwithstanding), I feel up to dealing with it all.

These results (and more) came after a relatively short time of doing them. Seriously. I started seeing real results after only a few weeks. Just in terms of feeling better, more centered, less foggy, more awake in the morning.

And this, after a prolonged period of sedentary isolating.

Oh, sure, I was active as a kid (and clumsy and prone to falling and hitting my head, unfortunately), and I went through periods of working out regularly and getting regular exercise as an adult, but after my last fall in 2004, the whole exercise thing went right out the window. It was bad. I went from being a regular at the gym to not even being able to set foot in the building, because I was having so much trouble understanding what people were saying to me — it totally freaked me out.

That freaking out was a problem. It was a problem at work and at home. It was a problem when I was with people or alone. My sympathetic nervous system was whacked and everything I encountered that was new or unfamiliar felt like a life-and-death threat, which had me pumped up on adrenaline all the time. I was a mess to live with. I had fallen, and I couldn’t seem to get back up.

I became intensely inactive. I stopped mowing the lawn and taking care of the plantings around the house. I stopped clearing leaves when they fell. I stopped sweeping the driveway. I stopped fixing things around the house when they were broken. I stopped going for the walks that I’d loved to go on for as long as I could remember. I stopped talking to people. I stopped talking to my spouse. I just stopped. Everything I encountered felt like a monstrous threat — one to be fought to the death or fled from in terror.

God, how miserable that was! The wild thing is, I didn’t even realize how whacked I was. All my alarm felt 100% justified. I felt absolutely positively certain that every novel situation I encountered was indeed a threat to my safety and sanity. I was going rapidly downhill, and I wasn’t going down alone. I hate to say it, but my spouse’s health declined rapidly as my own TBI issues escalated.

So, what got me out of that? Realizing, for one, that I was in danger of being put on meds for my attentional issues. My PCP had mentioned the possibility of putting me on something for my distractability, and my neuropsych had started mentioning the different medication options available. Talk about freaking me out. I had been on some heavy-duty meds for pain, back about 20 years ago, and they totally screwed me up. To the point of partly disabling me. What’s more, the thought of having someone else control my biochemistry — whether a pharma company or my neuropsych or my doctor (none of whom have to live in my body and brain, and none of whom are instantly available to me, should I get into trouble) — freaked me out enough to get me to sit up and pay attention and try to find some other way to wake myself up in the morning.

I had been trying for some time to figure out how to get exercise into my life, as I watched my weight increase and my strength decrease. I just didn’t have the intensity of focus required to figure out how.

When the docs started talking meds, I found my focus real quick.

The rest, as they say, is history. My life has done a 180-degree turn, and my mind and body and brain are doing better than ever. My neuropsych kind of looks at me oddly when I rave about how awesome exercise is, but theyr’e not living in my body and dealing with my brain, so how would they know what a qualitative difference it’s made? My PCP, thank heavens, is no longer talking about meds, and my level of functioning is on a whole new plane.

All this, I believe, because I have a solid physiological foundation. I’m exercising all my brains — in my skull, my heart, and my gut — and exercise helps them all communicate better with one another. My anxiety experience is now such that I can delay the knee-jerk reactions that plagued me for so many years. And I can stop to ask myself what’s going on, before I get carried away by my impulse to flip out.

It’s that effective and that powerful. And it’s so simple to do. Exercise. Take the stairs. Walk briskly instead of ambling along. Park at the other end of the parking lot and hot-foot it to the front door of the store — even in the rain. Get out for a walk on the weekends. And make a point of doing some light calisthenics before you get into your day. It can make a difference. It will make difference. The attention you pay to this will give back to you, over and over and over again.

As Nike says, “Just do it.” Your mind will thank your body for helping your brain.

What’s your mission?

Source: Aaron Escobar (the spaniard)

Disclaimer: This may turn out to be a clumsy post. I don’t want to insult anyone with any inappropriate references or seeming to make light of or diminish anyone’s career or calling or history of service. If I get clumsy with my terminology and come across sounding like an idiot, please accept my apologies. But I think what I’m about to say is important, so I’m going to take a shot.

I’ve been thinking a lot about what I’ve read about the movie Restrepo, a feature-length documentary that chronicles the deployment of a platoon of US soldiers in Afghanistans Korengal Valley. I’ve been thinking about one brief scene that someone described — a soldier being asked what he was going to do when he gets home and doesn’t have the constant adrenaline rush of war anymore.

He said, “I don’t know.”

See, this is the thing — with soldiers returning from the front, as well as TBI survivors who once lived fast-paced, action-packed lives. Logistically and qualitatively, there’s really no comparison between the constant life-and-death struggles of active-duty soldiers and, say, an acqusitions and mergers attorney. But biochemically, they’re much more similar to each other than to folk who aren’t bathed in a daily biochemical wash of super-amped-up stress hormones.

When you get bumped out of the front, thanks to TBI (or PTSD), what do you do?

We don’t know.

When it comes to addressing the issues of TBI/PTSD survivors who come from prolonged exposure to biochemical fight-flight extremes — especially when that exposure was in service to a larger-than-life, well-defined structure (in the case of m&a attorneys, the firm(s) handling the transactions and the rules of the game played… in the case of soldiers, the military culture and the rules of engagement). You have a very well-defined structure around you, you’re bound by that structure to follow certain rules, and the structure also defines for you what it is you’re supposed to do within very well-established parameters. And within those parameters, you participate in some of the most taxing and harrowing experiences the human system can endure. The structure, the order, the machine… it all makes it possible for you to do more than you ever dreamed you could — both for good and for ill.

It’s the highest of the highs. It’s the lowest of the lows. And over time, if your system is exposed to enough of those fluctuations without a chance to balance it out — the parasympathetic (rest and digest) nervous system gets out of practice, since it’s constantly pushed out of the way by the sympathetic (fight-flight-fake-it) nervous system — you get stuck in gear. Like the cable of your clutch goes on you when you’re in the fast lane hauling ass out of Los Angeles.

And then you get hurt. Or you get sent home. Or your tour ends.

And then what?

You get out of the hospital/rehab. You try to settle in at home. You look for something to fill the void left by the absence of your colleagues or comrades in arms. Everyone is telling you, “Relax… Take it easy… Calm down…” But the very things that kept you going all those months/years, the very things that made you who and what you ARE… well, they’re gone.

And how does a ghost relax? How does a shadow take it easy? How does a shell calm down?

Getting injured, getting hurt, getting fired/discharged… There’s more to it than just losing your place in the rank and file. You actually lose yourself. Who are you, if you aren’t doing the things you’ve strived to do, month after month, year after year? Who are you, if you don’t have that structure to work in, the rules to define you, the culture to tell you you’re needed?

This, to me, is the most debilitating aspect of TBI — and probably PTSD, too. It’s not just some hurt that needs to be healed or some biochemical imbalance that needs to be righted. It’s a crushing, diminishing, awful loss of the very essence of who you’ve become. And the rest of the “civilian” world — unless they’ve been in that life — cannot possibly understand how insulting it is when they tell you to relax, calm down, take it easy.

Who you are and what you are is about doing and being the exact opposite. Because that’s what you do. You don’t relax. You don’t calm down and mellow out. You don’t take it easy. Because you have a job to do. You have a mission to accomplish. And because you are who you are, you cannot and will not rest, till you finish the job.

So there.

Some of us need missions. We need a structure, a higher purpose, a job to do. We need someone to tell us This Is The Priority, so we can pitch in and do our part. We need to be part of something bigger (and badder) than ourselves, and lose ourselves in service. Some of us are not part of the cult of personality, but part of the brother-/sister-hood of service, whose very essence is refined and shaped by our selfless dedication to the Higher Good. We dedicate our lives and our whole selves to duty and to making a difference in the world — not for the sake of our own glory, but because that’s who we are.

And we need a mission.

Coming home — whether from the front or the hospital — or getting up after a fall, climbing out of a wrecked car, or waking up after being knocked out, we are not the same people as we were before the events that re-shaped our lives. But we still need direction and purpose. In the absence of the larger structures (which no longer have need of our broken selves), it’s up to us to find in ourselves where we want to serve, how we wish to contribute. I firmly believe that each and every one of us, no matter how damaged, has a role to play and a place to fill. If we haven’t got the coordination or the cognitive ability we had before, there are other ways we can pitch in and help out. If we haven’t got the old skills we once had, we have the ability to develop new ones, perhaps ones we never thought we’d have/need.

Once injured, once hurt, once damaged by the world we once participated so fully in, it can be all too easy to get lost in the shuffle.

But if we step up, we can make a fresh start, with a new mission, with a new way, a new dedication. We may not have the old structures around us, but we can find and/or create new ones. This is something we can do.

For some of  us, it’s something we have to do.

What’s your mission?

Growing Evidence Suggests Progesterone Should Be Considered A Treatment Option For Traumatic Brain Injuries

Found this on another blog:

Researchers at Emory University in Atlanta, GA, recommend that progesterone (PROG), a naturally occurring hormone found in both males and females that can protect damaged cells in the central and peripheral nervous systems, be considered a viable treatment option for traumatic brain injuries, according to a clinical perspective published in the January issue of the American Journal of Roentgenology. “Traumatic brain injury (TBI) is an important clinical problem in the United States and around the world,” said Donald G. Stein, PhD, lead author of the paper. “TBI has received more attention recently because of its high incidence among combat casualties in Iraq and Afghanistan. Current Department of Defense statistics indicated that as many as 30 percent of wounded soldiers seen at Walter Reed Army Hospital have suffered a TBI, a finding that has stimulated government interest in developing a safe and effective treatment for this complex disorder,” said Stein.   read more

Survey for Texans with ABI

Dear Texan(s):

The Texas Legislature directed the Texas Health and Human Services Commission (HHSC) to study the need for long-term community support and residential services for persons who have an Acquired Brain Injury (ABI) (see exact text of legislation below). Acquired Brain Injury is defined as damage to the brain that occurs after birth. Congenital disorders are not included. ABI can result from an accident or other traumatic external blow to the head as well as from a non-traumatic injury, such as a stroke, heart attack, brain tumor, infection or substance abuse.

As part of this study, HHSC’s Office of Acquired Brain Injury is conducting a survey of stakeholders that is being sent to:
• People with an acquired brain injury;
• Family members;
• Caregivers;
• Service providers;
• Advocates; and
• Other stakeholders.

The survey asks for your opinion about the most important long-term community supports and residential services for people with ABI in Texas. A list of services is included in the survey. You may choose any three or add others. The report of survey results will discuss the services and supports that receive the most votes. Remember, these services are for long-term community and residential services and supports only.

Please complete this important survey and make your voice heard by state leaders. It will take only a few minutes of your time. Your needs and opinions are important.

All responses are anonymous. No personal information will be shared.

Please complete the survey by Wednesday, February 24, 2010, by clicking on the following link:

http://www.surveymonkey.com/s/23HWNDD

Please forward this email to anyone in Texas concerned about brain injury services and supports. The more responses we receive, the better we can represent this important issue. Thank you for your time and participation. For information about the Texas Office of Acquired Brain Injury, visit the website at:

http://www.hhsc.state.tx.us/hhsc_projects/abj/index.shtml

Sincerely,

Office of Acquired Brain Injury
TEXAS HEALTH AND HUMAN SERVICES COMMISSION
MC 1542
4900 NORTH LAMAR BLVD
AUSTIN TX 78751
phone: 512/487-3431
fax: 512/424-6991
email: oabi@hhsc.state.tx.us

Better Living Habits to Help My Brain Work Better

This just got posted as a comment at  my post about confabulating as a kid

  1. You can get away with treating your brain pretty badly and it still works okay, as long as you don’t have a head injury. That rule changes dramatically after a head injury. The brain malfunctions under any kind of unfavorable operating conditions.
  2. For example, if you skip breakfast and eat fast food for lunch, expect your brain to get sluggish. Having a healthy breakfast, including some kind of meat or other protein, is strongly recommended.
  3. You should not subject your brain to any kind of nutritional deficiency. That means drinking plenty of water, and avoiding starving yourself.
  4. There are many theories about nutritional effects on brain function that recommend avoiding sugar, white flour, or both. These are major ingredients in fast food. Although science has not reached agreement that eating a diet which is heavy in fruits and vegetables, whole grain bread, and healthy sources of protein (fish and chicken) helps your brain to work better, enough nutritionists suggest this kind of diet to make it worth considering.
  5. Lack of sleep is a major source of reduced brain ability, especially in people who have had head injuries. To the extent that you can do so, you should make sure to get enough sleep. If you have difficulty in sleeping, this topic will be discussed in an advanced chapter.
  6. If your injury makes you prone to getting tired, there are “energy management” techniques that allow you to make best use of the capacity you have.
  7. Try to do your most difficult and important work early in the day.
  8. Try to avoid working under tension as much as possible, as that burns extra energy.
  9. Try not to do one kind of activity for long periods of time. Switch off from one activity to a completely different kind. For example, after reading something difficult for half an hour, switch to doing dishes or gardening. When you do this, you stop draining the last chemicals out of the reading systems of your brain and start using other, different systems. Switching activities like this can allow you to get a great deal done without getting completely exhausted.
  10. If there are stresses where you live or spend time, work on reducing those stresses. For example, after living or hanging out in a messy room for a long time, some people find that it actually reduces stress to straighten it up. If your living area is infested with bugs, and that bothers you, take steps to get rid of them. Any reduction in stress is likely to make everything work better.
  11. Getting some physical exercise every day seems to help the brain to work better.

What if I have nothing to prove?

I’ve been spending a fair amount of time tracking my experiences, the past week or so. I haven’t been quite as diligent as I could be, but I’ve been really caught up in learning new skills for work that are as interesting as they are essential.

I’ve also been looking back at my experiences tracking from about a year ago, and I can see that I’ve really come a long way. A year ago, I was painfully conflicted about just about everything in my life. My work situation was in flux to an almost perilous degree, my internal landscape was pretty torn up by emotional storms, my outbursts and meltdowns were intense and fairly frequent, and I was not communicating well at all — with anyone.

I can’t say that I’ve completely righted my life, but the seas I’m sailing are a lot less stormy than they were this time last year. I’ve learned how to not only handle myself better in a storm, but how to tell if a storm is coming, and steer clear of those waters. All in all, I have to say that I’m doing a whole lot better now, than I was before. I’m probably doing better than I have in my entire life.

A big part of that process has involved getting to know the ways in which I’m limited, or the ways in which my brain functions in a non-standard way. There are a select few (but fairly significant) ways that my brain differs from what’s expected. I tend to memorize things from rote, rather than grouping ideas or things into thematic categories. My processing speed is slower than would be expected of someone with my level of intelligence. And I have a dickens of a time with working memory — I tend to lose hold of new ideas and information after only a short bit of interruption, or if I shift my attention to something else and then try to come back to it.

All my life, these things have been a problem. And they’ve given rise to a whole raft of other issues, which I’ve really struggled with for as long as I can remember. Ironically, I haven’t had a really clear understanding about the nature of my problems. I knew — vaguely — that something wasn’t right, but I didn’t understand exactly what was wrong… or why. I always just figured I was some kind of idiot or I wasn’t trying hard enough or I was just being lazy or I was being a bad person. And that belief was reinforced by countless people around me who couldn’t figure out why someone as smart as me could be so dumb at times. So, I thought there was something really wrong with ME, and I told myself I had to work really, really hard to redeem myself.

Thinking that there was a problem with me gave rise to an inner drive and intensity that’s been fueled by guilt and shame and a deep need for some sort of redemption or salvation. I’m not talking about the religious type, rather, a daily striving to make up for the things I thought I was doing wrong… for the ways I thought I was living wrong… for the ways I was being wrong… which led to my screw-ups, misunderstandings, faux pas, clumsiness, forgetfulness, confabulation, etc. I’ve had this monkey on my back for decades, hopping up and down on my head, driving me to fix what I’d messed up, to make right what I’d mucked up, and work really, really hard to prove to the rest of the world — and myself — that I was not a loser, that I was not a slacker, that I was worthy of being an equal member of society.

All my life, I’ve been driven to prove I can do it, because there was a constant voice in the back of my head that told me I couldn’t. We all have this little voice in the back of our head, repeating to use both truths and lies about ourselves, based on what we’ve experienced and been told about ourselves.

This voice told me I would mess everything up — because that’s what I generally did. So, I had to work twice as hard to make up for my messes.

This voice told me I would get turned around and lose my way — because that’s what always seemed to happen. So, I had to bend over backwards to figure things out ahead of time to prove to myself that I wouldn’t get lost.

This voice told me that I would never be able to do the most important things, like have a good job and own a house and be able to pay my bills, and be a productive member of society. So, I had to drive myself to take on the biggest tasks, make the most money, have the best house, and get involved in the most worthy causes, to show that it wasn’t true.

Now, I can’t say I dislike having a good job and a nice house and being involved in worthy causes. I really enjoy having a clear view of where I’m going in life. And I enjoy working hard, so pushing to achieve suits me just fine.  I also need to maintain what I’ve worked so hard to build up.

The thing is, now that I know so much more about what makes me tick, I need to find new reasons for doing these things — and doing them well. Now that I can see how so many of my problems have stemmed from my brain injuries, rather than fundamental character flaws, I’m finding that I’m a lot less driven to do everything in order to prove myself. The intensity of my past is mellowing, and that edginess that pushed-pushed-pushed me is on the wane.

In many ways, the pressure is off. Because I’m not a bad person — I’m an injured person. I’m not lazy or crazy or defiant. I’m in possession of a brain that works more slowly than would be expected… that gets bits and pieces of information instead of the whole shootin’ match… and that has a genuine need to question statements and orders, because I honestly don’t understand everything when it’s presented to me in one whole package.

And that’s a good thing. How long can a person be reasonably expected to function at such a high pressure level? I’m not sure I could have lasted much longer, personally.

But it’s also a problematic thing.  Because I’ve built this life which I really enjoy, I really like, I really value. And I have to keep it going. I have to maintain it all — and it’s a lot — without the guilt-and-shame-and-panic-driven engine in my head and gut chug-chug-chugging away.

I have to find another reason to do things, other than simply proving that I CAN DO IT. I know I can. I’ve proved to myself and everyone around me that I can. And now that I know better why things in the past got messed up, I can warn myself away from recurring dangers and not run into those proverbial ditches along the road of my life. But without the same level of self-recriminatory redemption obsession driving me forward, what’s going to drive me now?

no one believes me after mtbi

Yesterday someone found their way to this blog by typing in this sentence. And the other day, I fielded a comment from another TBI blogger who has been having problems getting support from her family.

I think one of the most challenging friggin’ impossible aspects of TBI, especially MTBI, is the amount of skepticism that the rest of the “neurotypical” world has towards the brain injured. Because they can’t see our injuries, they have no idea they exist. And they often flatly refuse to admit that they may exist.

Our struggles are seen as “laziness” or some other character defect. And if we really wanted to do some things, well, we should be able to, right? After all, we have free will, and where there’s a will there’s a way. Right?

Not always.

As one of my readers, M, recently commented quite eloquently, our brains are changed by the experience of injury, and it is vital for us to factor in that change, when setting post-TBI expectations. The will and indeed the whole personality is intimately tied with the brain, and when the brain changes, well, the personality and character of the survivor will, too.

It’s important to approach our changed brains with the right information, compassion, and non-judgment. If we don’t, it just makes matters worse. And no one is served.

One of the changes that can take place — which has been an ongoing challenge for me — is that the amount of information the brain takes in can be diminished. That can lead to all sorts of processing issues, with important bits of info getting dropped – or, at times in my case, never getting in at all. And when the brain has less information, but doesn’t realize it, then it can start to miscalculate without realizing it. This can lead to a condition called “confabulation”, where a person comes up with ideas and concepts that are only partly accurate, but they have no idea they don’t have the whole story. They may think they’ve got it all figured out, but they don’t. Yet they don’t even realize it, which is a problem, when it comes to dealing with other people, some of whom may know better.

I know that my own life has been marked by many, many instances of people thinking I was lying or intentionally misleading them about things I was saying, when I was simply confabulating. I was absolutely, positively, 100% certain that I had all the details right, I had the best of intentions, I was trying really hard to connect with them, and I thought for sure I was being intelligent and sensible and together… when all along, there were key pieces of information missing in what I was talking about.

I wish I could give a specific example, but I can’t think of one right now… no, wait — here’s one:

I was hanging out with my dad on a recent family trip, and I started talking about some new idea that I thought he’d really relate to. My dad’s a really heady guy and he loves to talk conceptually about stuff. Some kids talk to their dads about golf or baseball. I talk to my dad about ideas. So, wanting to really connect with him during my visit. I had this inspiration to tell him about a new concept that I’d been thinking about, over the past few months. My dad and I have had a somewhat rocky relationship — I never turned out to be the kid he wanted me to be, and he was pretty rough on me when I was young ’cause I wasn’t living up to his expectations. So, I’m always looking for some way that we can connect as adults, rather than as the standard-issue dysfunctional/disappointed parent/kid.

Anyway, I was totally psyched about having thought of this idea, and I was certain that another friend of mine (who is a lot like my dad) had told me about it. I went into all this detail about this concept, moving through it somewhat gingerly, so I didn’t miss any of the details or nuances… trying to sound halfway intelligent… getting kind of insecure, ’cause my dad was getting quiet like he always does when he’s about to correct me or criticize me… just soldiering on with this idea, trying to flesh it out and make it sound out loud like it sounded on the inside of my head.

My dad kept getting quieter and quieter, and I got more and more nervous, and I started talking really fast about how I’d heard about this idea from a friend of mine… Eventually, the conversation petered out, and my dad went off to do something else. He seemed like he was upset with me or something, but I couldn’t figure out what I’d done wrong. 43 years old, and I’m still trying to figure out why my dad is miffed at me… It’s kind of sad.

Well, long story short, after a few days, I suddenly remembered that my dad was actually the one who had told me about this concept I’d been discussing. It wasn’t my friend, it was him. He’d told me about it either on the phone, in an email, or during one of my past visits. And when I was going on and on about my friend and their ideas and the details of what “they had told me”, I was actually repeating back almost verbatim what my dad had told me about, as though I had good sense.

How humiliating. I had been so very, very wrong about some very key ideas, and yet I had been so utterly convinced that I was right. And there I was, a grown adult, still trying like crazy to win my dad’s approval, like some little kid who’s got no clue. And there my dad was, getting that same old look on his face that said, “Here they go again… what a liar… what an idiot… space cadet… dufus… dork. I can’t believe this is my kid — 43 years old, and still telling tall tales. When will they ever learn?”

Confabulation is no friggin’ fun. Especially in 20/20 hindsight.  It’s inconvenient and exasperating for others when it happens, it’s disorienting for me when I’m in the midst of it, and it’s humiliating for me, when I figure out later that it happened. I just hate it. But I’m not sure what to do about it.

I’m not sure if there’s anything to do about it, other than educate the people around me about what it’s about and how/why it happens. The only problem is, figuring out how to educate them. Because by now, after a lifetime of this foolish consistency, a lot of people who are close to me have a hard time believing me, to begin with.