Oh, the uncertainty…

I came across this quote today:

“You see, one thing is, I can live with doubt and uncertainty and not knowing. I think it is much more interesting to live not knowing than to have answers which might be wrong. I have approximate answers and possible beliefs and different degrees of certainty about different things, but I’m not absolutely sure of anything and there are many things I don’t know anything about, such as whether it means anything to ask why we’re here …. I don’t have to know an answer. I don’t feel frightened by not knowing things, by being lost in a mysterious universe without any purpose, which is the way it really is as far as I can tell. It doesn’t frighten me.”

– Richard Feynman

Well said, Mr. Feynman. I, too, can live with doubt and  uncertainty. If nothing else, there’s only one thing I actually can be certain of — that along the way, there will be plenty of doubt and uncertainty. Then again, maybe there won’t be 😉 And the idea of “being lost a mysterious universe without any purpose”… well, that’s not unfamiliar to me.

I’ve been having a bit of existential angst, lately, and it seems to me that, rather than having the universe (or even our lives) “pre-loaded” with purpose, it’s our job to provide the purpose on our own. Free will and all that. Seems to me, that if someone or something else is supplying the purpose for us — and it’s just our job to live up to it — then it really cuts back on the amount of self-determination, even free will, that we have to exercise. Personally, I’d rather come up with the purpose on my own.

Anyway, I had an interesting discussion with someone close to me, a few months back. We were talking about faith and religion and what religious orientation we were. I said that I believe a lot of things, but I just believe them — I don’t pretend to know them for sure. And ultimately, I had to say, I really am an agnostic. It’s not that I don’t hold to any creeds or tenets — I do. I’m just all too aware that I could be wrong.

It really bothered the person I was talking to. They’re the kind of person who needs a lot of certainty in their life. They require it, in fact. I guess they grew up in a very uncertain environment, where their parents’ unpredictability was literally life-threatening for them, at times. I think that’s shaded their view of life a lot.

Well, I had a very uncertain childhood, too, but most of the life-threatening uncertainty took place outside my home. Inside, there was plenty of pain and struggle, but I can’t say that it was life-threatening… Maybe that’s saved me.

Anyway, yes, I am very comfortable with not knowing a lot of things. Knowing them, in fact, would probably depress the crap out of me, because the mystery would be gone, and for me, mystery is the nectar of life. It sweetens the experience and gives me something to look forward to discovering. Doubt, too, is an essential part of my life, for it keeps me honest and keeps me paying attention.

It’s the absence of certainty that makes things the most interesting for me. The utter, total lack of surety that I feel whenever I approach science or medicine or philosophy or religion, is what entices me to come closer… They seem (to me) to be disciplines pursued by individuals passionately dedicated to infusing life with certainty, yet at their very core, they do exactly the opposite, constantly evolving and turning over their own “proven” tenets, when they are at their most honest.

That contradiction, the overturning of “certainties” and the tearing-down of prior assumptions is where things get the most interesting for me. And the folks who dedicate their lives to the uncertain science of self-challenging discovery really comfort me with their openness. At the same time, the folks who ply their scientific and medical and religious trades with an air of absolute certainty strike me as being the least reassuring, especially when they sit across from me behind their big wooden desks and proclaim “beyond a shadow of a doubt” that such-and-such a diagnosis or prognosis IS SO.

It’s a problem, that discomfort with absolute “certainty”. For my doctors, and for me. They’re trying so hard to convince me that they know what they’re doing, and the harder they try, the less I believe them, because they seem so unwilling to leave room for error. Or maybe that’s required by their malpractice policies. Who can say?

The more I think about it, the more I realize that this doubt of mine, this comfortability with doubt and uncertainty, and my willingness to entertain different approaches and different positions and different “diagnoses” is one of my biggest points of friction with the folks in my life who present themselves as experts. For me, expertise isn’t so much about being in possession of the right answers, as it is having mastered the fine art of asking the right questions and being open to new possibilities, and being willing to do what needs to be done, to get to a workable solution/response/alternative to a sticky problem (aka, me).

It’s not about having one single answer (or more than one). It’s about having the capability of asking the right questions and being entirely open to the possibility that there is no single answer (or more)… and that life is a big-ass mystery, so there you have it. It’s about having a firm enough grasp on reality that you can see that you cannot possibly know much of anything for sure, because the world is an infinitely huge place with tons of plausible possibilities, and — tell me again — why is it so necessary to be ABSOLUTELY POSITIVELY RIGHT ABOUT EVERYTHING ALL THE TIME?

I’m rambling, I know. Taking advantage of your (perhaps) overtaxed patience… I apologize for that. But the bottom line I’m trying to get to is in keeping with the nature of this post — for me, there is no ultimate answer, there is no final proclamation, there is no silver bullet. And (since I might be wrong), if there is, I don’t want to know about it. I like having things open-ended. I like having things unresolved. Deep down inside, all my bitching and moaning notwithstanding, I like having a really unsettling level of uncertainty in life, and I like constantly seeking out answers.  It’s the journey I enjoy… not so much the final arrival at the destination. For me, the destination keeps changing, keeps shifting, keeps morphing into something quite different than it was last week.

So long as I can keep up with my rest and not completely fry my system with pointless excess and rank stupidity… so long as I can remember that I am, after all, very human, and nobody’s got this human thing all figured out… and I can remember that I’ve gotten clunked on the head often enough to shear and shred the neural connections that other people tend to take for granted… well, I can accommodate the confusion and the uncertainty and the mystery of it all. I can cut myself a break and pace myself and just keep on keeping on as best I can. I can let myself marinate in that divine uncertainty, that heavenly bliss of who-knows-wtf-is-going-on (and who cares?) And I can let the rest of the world do its thing, as well.

At the end of the day, I guess what matters most to me at this particular point in time, is not so much specific outcomes in undertakings in my life. What matters most to me is the process I go through to get where I’m going. I may never arrive at exactly the “right” place, or achieve precisely what I set out to. But if I’m true to myself, to my heart, to my convictions, and I don’t let the meanness of the world get to me… if I can manage to make room for love in my life as frequently as possible, and I can extend a helping hand to others along the way… then wherever I end up, and whatever shows up on down the line, will have its place.

Mystery.

Discovery.

And more.

All Good.

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Getting it right… most of the time

Had a mixed weekend… My parents came to visit for their annual catching-up time. We’ve been getting together in a spirit of peaceful co-existence for a little over 10 years, now. It’s a way to make up for the years lost to our mutual inability to agree on many things in life — an inability that bordered on overt hostility for many years. My parents aren’t bad people. They just have their own point of view that isn’t always tolerant of me and my opinions, or inclusive of my limitations, and they frequently refuse to budge. And since I’ll admit I have the same tendencies. This apple didn’t fall that far from the tree.

Over the last 20 years or so, their hardline stances have gradually eased (helped a great deal by my vacating their house, 25 years back), and the range of what they consider acceptable has widened considerably. I’ve also learned to accept them for what they are, appreciate their strengths, and cut them some slack for their limitations. But it’s taken a long time to get to this place.

They used to give me so much crap about how I lived my life, how I conducted my affairs, and how I behaved. They didn’t much care for the jobs I held, the clothes I wore, the way I cut my hair, the schedule I kept. I was doing the best I could, but they didn’t always see it that way. And my standard response was to either go on the attack, or withdraw from any contact with them at all.

In retrospect, I can see that I’ve often misjudged their reactions to me. I was a very intense kid, and I took everything hard – including their judgment. My other siblings somehow manage to let their criticisms roll off their backs, or at most treat them as an inconvenient distraction. I, on the other hand, have always taken my parents’ criticisms to heart — I’ve taken things they’ve said and done far more personally than they probably ever intended it.

But truth be told, my parents were often overtly hostile and antagonistic towards me, when I was growing up. Even though I was very intense, they were pretty hard on me. They seemed to think that I intended to screw up, or I just wasn’t trying hard enough. They rarely seemed to grasp the fact that I needed help sorting things out — and when they did, it was cause for embarrassment. Teasing. Angatonism. Name-calling. Shame. Etc.

In retrospect, I think that of their rough way of relating to me possibly had to do with their concern about me not being okay in life. They worked overtime trying to steer me back on the right path, after I’d fallen off… never really understanding why I’d fallen off or gotten turned around. They were big into correcting me after I’d screwed up, which — with head-injured kids — is not the most effective thing to do. You’ve got to be pre-emptive with head-injured kids. Steer them in the right direction before they have the chance to get turned around. My parents, for some reason, never seemed to be paying enough attention ahead of time, to steer me right. So, I was constantly being corrected for things I didn’t realize I was doing wrong — till it was too late.

But despite all my screw-ups, my false starts, my blunders… after all this time, my folks have seen that despite the “worst” of my work and life decisions, I’m still here, and I’m happier than ever. I think their onetime hardness towards me had to do with worry about/for me. And I think a lot of their softening has to do with them seeing me actually grow up to become a productive member of society, holding down steady work and buying a house and keeping a very involved marriage going for 18 years, now. Even though I’ve done most things “wrong”, according to their standards, on the whole, things have worked out very well for me.

My spouse has also helped immensely, as they flatly refuse to put up with my parents’ most intrusive and verbally abusive crap, and they challenge them on their fondly held assumptions, to make them think about what they say and do. My spouse has been able to stand up to them far more than I ever could — or probably ever will. They don’t have the history with them, and they also don’t get the brunt of my parents’ aggressive judgmentality. For some reason, my parents don’t try to corner my partner the way they come after me.

But then, my partner didn’t grow up with head injuries, and my parents never acclimated to treating them with the proverbial iron fists in velvet (when I was lucky) gloves they used on me. In their eyes, I suppose I am still the “damaged goods” kid that used to worry them sick and bug the crap out of them with my poor choices, my bad behavior, my inability to get all the facts straight about much of anything, and just give up doing whatever I was doing whenever I was under pressure. To them, I’m still the sibling who beat up on the others, the one who wasn’t safe to leave alone for long, the one who would just do things that would get me in trouble — like run out in traffic, or wander off in the woods, or drop/lose/run into various objects, or say the wrong thing to the wrong person at the wrong time — without apparently having a clue what I’d just said or done.

I’m still the “special” one in the family. Not the bold adventurer who’s overcome tremendous obstacles and difficulty to achieve some measure of success in my life — success far beyond anyone’s expectation (except mine), which is notable on any level — and even more remarkable, given my history and my neurological profile. My parents haven’t seen me go through all my cycles and changes, they haven’t seen me in action, day in and day out, so they can’t appreciate everything I’ve accomplished or the sacrifices I’ve made to accomplish it. And frankly, they are so different from me, with such different social and cultural priorities (they were raised in a completely different place and time than me), even if they had been privy to all my adventures over the years, they probably wouldn’t have been able to fully appreciate what I’ve accomplished.

The things I’ve achieved — the good-paying job, the beautiful home in the well-to-do community, the mainstream social status, the public service position, the attainment of material success… those aren’t things that my parents particularly value. They’re much more interested in church and raising kids and alternative local community — none of which are regular parts of my life. So, the accomplishments I’ve achieved are all but invisible to them.

Likewise, the things that they value most are just not on my radar. I think I’ve just had so many problems with communication and interactions and behavioral issues, from an early age, that I never fully acquired the skills necessary to have the kind of life my parents have — lots of social interaction, lots of friends, lots of activities and travels and explorations. I have also had problems with fatigue for as long as I can remember, so I’ve never had adequate energy to match their pace. And when they pushed me to keep up with them, as they so often did when I was a kid, it just led to meltdowns, behavior problems, processing problems, judgment problems… Problems.

So, the enjoyment they feel with activities like getting together with large groups of people for fellowship and fun, and constantly going-going-going, working-working-working are not on my radar, either. Which leaves us with precious little to share, at times. Much as we would all like to find common ground, I’m just not there… and neither are they. And when they try to reach out to me, I’m often so overwhelmed and overwrought with their energy, their intensity, their sensory bombardment — they love to talk-talk-talk at the tops of their lungs and make contact a lot with hugs and reaching out to touch my arm or my shoulder as they’re talking — I end up experiencing a lot of auditory/sensory distress and sometimes pain. I don’t much care for it, and I don’t know how to articulate what I need them to do. And they still don’t know how to interpret it when I withdraw and start to get snappish with them.

So, we all end up on pins and needles, unsure how to interact. I try… I really, really do. But frankly, they’re too much for me to handle. And to this day, they cannot seem to temper their expression and tone down their level of excitement and activity to a tolerable level for me. They don’t seem to realize that they need to. And I can’t figure out how to get them to back off of me. When I do ask them to chill, they get upset and seem to feel rejected or pushed away. They just don’t understand the issues I have, and I’m not sure how to explain it to them without them taking it as though I’ve hurt them, or them sliding into some abyss of guilt and shame over not taking better care of me when I was little.

Well, it probably sounds pretty bleak — and in some ways, it is. On the whole, though, my parents’ visit this past weekend was pretty good. We didn’t have any of the blow-ups that sometimes happen with me, when I’m alone with them. My spouse had to work, one of the days, so I was all by my lonesome with Mom and Dad for most of  Sunday, which made us all a bit nervous. But I got through it without losing my temper or freaking out or inadvertently saying things that they found hurtful.

I also managed to get through without getting “pinned down” by my mother over my financial situation (no, I did not divulge details, as there’s nothing they can do — they have no money to lend me and they don’t know anyone who does). And I managed to avoid breaking down in tears as I sometimes do, when she “locks” onto me and starts grilling me for information. I came close to losing my cool — my mother, for some reason, loves to poke and pry and pick at emotional “scabs” until you break down in tears.

She’s always had a somewhat sadistic streak, and she loves to push people till they break. She did it to her older sibling (who is “special”) when they were growing up, I’ve seen her do it to many of her friends and relatives, and she did it to me a lot, too, when I was little. She used to just hound me, when I was a kid, pushing and pushing and pushing me to talk about sensitive subjects, talking and talking and talking, and never letting up until I was beside myself with confusion and frustration… and snapped. I’m not sure what makes a grown woman do that to a child, but she always seemed to really enjoy it when I was growing up, and she still gets into that “mode” at times.  She almost got to me on Sunday,when I was alone with her and my dad, pushing and pushing and pushing me over not having any retirement savings (I didn’t get into the details about why with her). But I managed to avoid a total freak-out and redirected the conversation — with the help of my Dad, who is none too keen on my mother’s mean streak.

Thinking back on the weekend, it’s kind of sad that the best measure of how well it went, was how well I managed to avoid something bad happening. I’ve never had an easy relationship with my parents. It’s nothing like what I see my other siblings having, and when they took turns calling my dad on Sunday to wish him happy Father’s Day, it was tough to hear the relief in his voice that he had someone else to talk to, besides me. It’s always been that way — he tries and I try, but he’s always happy to have a chance to talk to someone else when I’m around. I know I can be difficult at times, and it’s not easy to for me to interact and talk about things, but it would be nice if he could at least pretend to be interested in spending some uninterrupted time with me

It would be nice if I could just hang out with my parents without needing to do anything. But that’s just not how they are.

At least I did try to meet them on their terms. They tried to meet me half-way, too. And I managed to not lose my cool and cause any more damage that I already have with my hot, hair-trigger temper and my poor choices of words, so that’s progress.

We ended the weekend with me running out the door on Monday morning to catch the train to work, leaving them to finish their breakfast in the spacious family room of my beautiful house. I wasn’t around to make them nervous, and they got to enjoy the domestic evidence of how well I’m doing. It was probably the best way we could part ways after those 2-1/2 interpersonally challenging days. I wish I could say they left too soon, and that I wish we had more time together. But right here, right now, at least my parents and I are on amicable terms, we do care about each other, and we do all make an effort to peacefully co-exist when we’re in the same room.

That’s more than I can say for our relationship 15 years ago. And it’s more than a lot of other people can say.

I didn’t get everything right over the weekend, but I managed to get enough.

TBI Survivor Loved Ones – Don’t Put Up With Our Crap!

If you are a friend or family member or a significant other of someone who has sustained a head injury, you definitely have a unique set of challenges. Head injury is a terribly intrusive and disruptive condition to deal with — it can be extremely difficult for the survivor to deal with, and it can be utterly maddening for the people around the TBI survivor.

They got hit on the head, sure, but it wasn’t a bad injury, from what the doctor said. They weren’t even admitted to the hospital! They were foggy and groggy for a little while, but that passed. As far as anyone can tell, they should be back to normal, no problem. But all of a sudden, the person you once knew and loved — who may seem perfectly fine on the outside — is changed. Their temper is shorter. They forget things. They make stupid decisions and don’t even seem to understand how dense they’re being.

Subtle little differences can sneak in from out of the blue, and you sometimes can’t quite put your finger on it. They seem… different. You know they’re the same person they always were. But they’re not quite themself. And no matter how long you wait, no matter how patient you are, no matter how much you try to reason with them or walk them through things, they don’t seem to be getting any better.

Or, you can definitely see how they are different. They fly off the handle over nothing. They freak out over stupid things. They sleep all the time. Or they can’t seem to get to sleep or stay asleep more than 5 hours or so. They complain of constant headache. They complain of that blasted ringing in their ears. They suddenly grow aggressive, even violent, and they just “go off” for no good reason. They can’t seem to keep their act together and they keep getting in trouble with authorities – teachers, bosses, the police. Nothing anyone says seems to make a difference, and they don’t seem to learn from any of their mistakes.

For a loved one of a TBI survivor, standing by and watching someone seemingly self-destruct… or at least struggle terribly with things that used to be easy for them… must be terribly frustrating. And dealing with someone who used to be so sweet and loving, who’s now a pure terror when they’re tired or stressed, can be quite frightening. I, myself, have frightened lots of people I loved over the course of my life, due to my quick temper and a sometimes violent streak. I’ve never struck anyone I loved or lived with, but I have thrown and broken things and given people good reason to feel very afraid.

As a TBI survivor myself, I really feel strongly about what an important role loved ones can play in helping a head injury survivor not only recover from their physical injury, but rehabilitate behaviorally. True, the inside of our heads — our fragile, sensitive brain — has changed permanently, and some abilities we may never get back. Some of our cognitive challenges just can’t be helped. But when it comes to our behavioral issues, something can be done. I’m convinced of it. I’ve managed to overcome some really serious behavioral difficulties, and because of my relative success in this area, I’m able to find and hold down regular work. In this economy, you can’t put a pricetag on that capability. And most importantly, I haven’t done it alone.

Perhaps the number one TBI issue I have, is my temper. The inner storms that come up for no good reason really tear the crap out of me, at times. For the most part, I can keep my act together. 7 out of 10 times, nobody knows what a hard time I’m having dealing with something as simple and basic as dropping something or flubbing up. But it’s the 3 out of 10 times that get me in trouble. And it’s not good.

In my case, I am blessed to live with someone who is  pretty demanding. They are that way by nature — they have very high standards, and they expect people to live up to them. I have been constantly pushed and prodded over the years to improve myself as best I can, to not misbehave, to not be lazy, to not be lackadaisical, to not just give up. They have “ridden me” very hard, over the years, sometimes nagging and nagging and nagging until I thought my head was going to explode. But at the end of the day, when I did what I promised I was going to do, or I finished a job I’d started, or I’d done what I was supposed to do, or even when I’d tried and failed, the fact that they’d stayed on me turned out to be more good than bad.

Their encouragement has sometimes been gentle, sometimes strident, sometimes impatient, sometimes overly demanding. But even when they’ve been too hard on me and have given me all kind crap about things I couldn’t control – like my difficulties with remembering things, or hearing them when they were talking to me, or being slower on the uptake than they expecte me to be.

One of the things that’s made our life together more challenging over the years is that we didn’t factor in TBI in our interactions and my shortcomings. But when they started to learn more about TBI, they started to change the way they interacted with me, and they have been far more helpful than ever.

Once upon a time, they pushed and pushed and cajoled and nagged and cursed and hounded… with different levels of success. Now, they understand that patience and encouragement can go a long way. But they — and I — also know that sometimes I do need to be yelled at, in order to get my attention. Sometimes, I’m being so slow and dense, I can’t “get” what’s going on, unless it’s expressed at the top of someone’s lungs.

I don’t take the yelling personally, when situations are tight. I actually need to be yelled at. Or I’ll miss an important cue, I’ll run over that pothole, or I’ll do something that can get me hurt. The important distinction for me is that the yelling happens before an event, not afterwards, when it’s too late to do anything about it. If someone is yelling at me, because I am being dangerously slow and they’re trying to protect me, well then, please, by all means, yell at me.

For me, it’s important that people not handle me with kid gloves. My brain has been rattled a number of times over the course of my life, and in some ways, I’m really, really dense. I can’t be coddled and accommodated and treated like some victim by the people in my life.  And I also can’t be given carte blanche to just do and say whatever I damn well please, ’cause I’ve had bunch of brain injuries. It doesn’t help the people I love, to let me run roughshod over all of them. And it makes me feel terrible, when they let me do that.

Like it or not, there are sides of me that need to be disciplined, that need to be kept in check. And they need to be called what they are — unacceptable — by the people who are affected by them. Including myself. There are certain sides of me that need to be called out and stopped, before they do damage. My temper is hot and precipitous and often flares up with out my realizing how or why or that it’s in the process of happening. And when I’m going off over something that doesn’t warrant my level of rage, I need to be told to be quiet. I need to be told to calm down. I need to be told that my outburst is not appropriate, and I need to step away and calm myself down before I can be around other people. I need to be called on my crap, and I need the people around me to refuse to accommodate bad behavior.

There really is no excuse for bad behavior. There are plenty of reasons for it and my TBIs have not helped, but there’s no excuse for letting myself get out of hand and stay that way. Left unchecked and unstopped, temper tantrums, yelling fits, being snappy and course and crass and obnoxious is disruptive to everyone, hurtful to others, and it’s embarrassing to me. After all, I have to live with me, too. It’s not just about my loved ones. It’s about me having to look myself in the eye every morning when I get up. It’s about me being able to hold my head up, having self-confidence that comes from knowing I can manage my behavior, and having the pride of knowing I’m in charge of my own fate, even if my brain doesn’t always cooperate.

But I need help managing. I need help from my partner, who constantly amazes me with their patience and their intelligence and their willingness to stick with me — as well as their strength in keeping me from running roughshod over them. I need help not only with encouragement, but also being pushed to see what all I’m capable of, to see how far I can go in life, and to keep tabs on my inner situation as I go. And my partner has given me that regularly over the yeras.

Most of all, they’ve helped me by keeping me honest, by refusing to tolerate my bad behavior, my laziness, my eagerness to just give up. They have “kept on me” about so many, many things that I wanted to just let drop. They have prodded me to do right, when I wanted to just quit or do wrong. And they have flatly refused to put up with my crap, threatening many times to leave my ass if I didn’t get my act together and stop being such an a**hole.  They have told me in no uncertain terms that the tone I was taking was verbally abusive, or that I was frightening them, or I was getting out of line with my snarky comments. They have yelled at me, cussed me out, made me sleep in the guest room, refused to cook me dinner, given me the silent treatment, taken away my credit cards, and nagged-nagged-nagged me till I did what I was supposed to do, anyway. And I have never once doubted that they loved me, and they were doing all of that not because they were mean-spirited or wanted to hurt me, but because we both have standards to live up to, and they weren’t going to let me off the hook that easily.

Now, sure, there have been plenty of times when I’ve railed against their behavior. I’ve moaned and bitched and fussed over their demanding streak, and how hard on me they could be. I’ve wept bitterly and angrily over things they’ve said and done, and I’ve yelled back plenty of times. But in all honesty, I have to credit them and their unwillingness to tolerate my TBI-induced stupidity, aggression, and stinkin’ thinkin’ for much of my success.

And I also have to credit myself. Because frankly, I wouldn’t be with this person — and I wouldn’t have stuck with them for 18 years — if I didn’t have standards of my own. If I didn’t agree with them about the range of acceptable behavior, and what is and is not allowed in our marriage, I wouldn’t be able to tolerate their level of demanding-ness. Rather than finding their standards annoying and aggravating, I find them good and positive reminders of things I already know, but easily lose track of.

Of all the things that make successful TBI recovery possible for me, standards of behavior — and the enforcement of those standards — are some of the most important. Understanding that some kinds of behavior are good and allowed, while others are not, is key. Having a code to live by. Having a set of internal guidelines. Agreeing upon rules about what is and is not okay. And submitting to the discipline of being policed — both from within and without — is key.

And my partner has played a huge role in all of this. If they had been inclined to hold back and not engage with me… to be the silent suffering type who just let me go off as much as I liked, and didn’t challenge me… to put up with my crap and then go talk to friends about how hard I was to live with… to not face me down and make me behave myself — or else… to do like so many people I know, who don’t understand what’s going wrong and don’t want to make waves and piss other people off, so they do nothing besides take the brunt of their loved-ones’ anger/rage/temper/sharp tongue… If my partner had been like that, I would not be as well-off as I am today.

Now, make no mistake — my life is no bed of roses. I’m really struggling, these days, with job stuff, learning difficulties, job performance issues, and extreme fatigue. I’m almost beside myself with frustration and agitation, and I am having a hell of a time sleeping. But I have no doubt that all these things would be catastrophic for me and my career and my living situation, if I didn’t abide by very strict guidelines about what is and is not acceptable, what is and is not okay to do/say/outwardly express. If I just cut myself slack, or if I lived with someone who suffered silently while I went off on tears all the time, I probably wouldn’t be here.

I’d be in jail.

Or on the streets.

And I would be alone.

I’m not kidding, and I’m not being facetious. I don’t say any of this lightly.

So, it may sound a bit overly controlling to some, and it might sound like borderline BDSM, but discipline is one of the biggest keys to my success. I’m not advocating loved ones of TBI survivors being strident harpies who give no quarter and drive their brain-injured loved ones to the brink of madness with an unending string of impossible demands. But there is something to be said for demanding that people do/be/talk/relate better than they are at the moment — and better than they think they can.

Ultimately, I think that we are all capable of far more than we think we are. And the first step towards being/doing/living better, is refusing to be/do/live worse than you have to.

Surely, we must be eternal

I’ve been giving a lot of thought, lately, to the eternity of life. And the presence of mortality. The strange and bitter irony of going through a lifetime of exploration and accomplishment, only to reach the end.

How odd… Is this what it all comes down to, at the end of a striving, living, thriving, struggling, learning, expressing, loving, hating, fearing, courageous, hoping, dreading lifespan?

Why in heaven’s name would we go through all this, just to peter out to… nothing?

Since it’s Easter, and since I was raised in the Judeo-Christian tradition, with my childhood steeped in the stories of the Bible, from Genesis on… through the generations of the Israelites… the prophets… the warriors… the sinners and saints… and on through the New Testament, with all its theologically labyrinthine teachings, well, it seems only fitting that I should dwell on the eternity of life at this time.

Spring is in the air — sort of.

New life is making itself known in the buds of trees and the emergence of lilies and tulips in the flower beds.

The deer are coming down off the mountain, hungry after the long, long winter and looking for fresh shoots in my gardens.

I have started a new job, am in the process of unraveling yet more health issue conundrums, and despite all that I’ve been through, despite all the roadblocks and the problems and the setbacks and discouragements… I’m still here.

I’m still standing.

Feeling a great sense of accomplishment, tempered with the acrid taste of mortality’s inevitability at the back of my mouth, in the back of my mind.

Surely, I have not come through all this for naught.

Surely, life must be eternal.

Now, not everyone ascribes to the Christian faith, I know. And different Christians have different interpretations of Easter. Different peoples all over the world of different faiths mark this hopeful time of year in different ways, each one revealing another aspect of the many aspected Divine jewel we call the Human Experience. “Eternal” can mean many things to many people, each meaning just a little “other” than the others.

And when I really think about it, as much as I want to believe in an afterlife, as much as I may be attracted to the idea of my spirit never really disappearing, but taking on different forms in different places, the fact remains that in the back of my mind, there is some small seed of doubt. Some folks shun doubt with all their might, as though it were a cancer or a pox. Others welcome it with open arms. I strike an uneasy balance with it, eyeing it from a distance like a hiker eyes a grizzly bear they’ve come across suddenly, foraging in the berry bushes in the fall.

I guess what it all boils down to for me, is that in whatever shape and whatever form I may ascribe to it, my life is indeed eternal. Whether I be spirited up to the heavens to join a personal lord and savior, or I be reborn in another place and time as a different person with a different set of lessons to learn, or I be turned into earth that then turns into new life of plants… which become the animals that eat them… which become meat for other animals… which become human life yet again in the eventual cycle of feeding… there must necessarily be an aspect of me that is eternal.

Perhaps my words will live on after I am gone. Perhaps the good deeds I have done, which made more life possible for others, will live through the lives I’ve helped in big ways and small. Perhaps the simple fact of my presence has been of assistance. I can only hope. And look for more opportunities to help some more — or at least do no harm.

In the end, it becomes far too vast and incomprehensible for me to follow, to untangle, to make sense of. So, I leave it at the simplest of statements that gleams with the faint sheen of faith:

Surely, we must be eternal.

The best cure for self-pity

Just when I’m starting to really succumb to the poor-me’s, I get an excellent reminder of what I really have going for me. It’s true, being a multiple MTBI survivor hasn’t made my life any easier, and I do have a lot of issues I need to overcome. But I’m also highly functional, I have full use of my body, I’m not laid up in a hospital or rehab, and I’m able to fend for myself.

My life isn’t perfect, by any stretch, but it’s a far sight better than it might have turned out, had my falls and injuries been worse. I really believe that I was divinely spared a lot of disaster over the course of my life — for what reason, I’m not sure. I’ve come close — so close — to being badly hurt, attacked, arrested, institutionalized, even abducted (when I was a kid and wasn’t very prudent about whom to talk to and how to interact with people)… not to mention sued and fired and a lot of other things people could do to me that would really mess up my life. Time after time, when I think back, I’ve narrowly escaped serious damage, literally through no effort of my own.

And I wonder, why was I spared? Why am I walking around in okay shape, after those car accidents, those falls, those attacks? Why am I able to walk through life on my own steam, when so many others are unable to do so? Why have I been given so much and allowed to keep so much of what I could (and perhaps should) have lost along the way?

What makes me any better than, say, the thousands of troops returning from Iraq and Afghanistan, who have really severe injuries — some of which cannot be detected from outside their heads?

What gives me the right to live as fully as I do, when others who experience the kinds of car accidents I was in are watching their lives fall to pieces before them, unable to think, remember, function, or even walk around a grocery store without sunglasses on?

What can possibly justify the fact that I’ve managed to keep my house, my family, my car, my job(s), even in the face of a debilitating head injury? What makes me so deserving, so special, so… worthy of all this?

I just don’t know. I look around me at the other folks who have sustained head injuries – from mild to severe – and I marvel at their resilience. I’m not sure I could hang in there the way they have. I look at the pictures and read the accounts and try to put myself in the shoes of folks who have to overcome not only the loss of their memory and their life savings, but also their most basic bodily functions.

And I am both humbled and chastised. The problems that I have — the slowed processing speed, the lousy short-term memory, the inability to concentrate on things longer than half an hour at a time, the chronic pain, the sensory sensitivities, the temper flares, etc. — as challenging as they may be, still allow me to move about the world on my own steam. They may keep me from being fully functional, but they don’t prevent me from looking and acting fully functional (which in our superficial world, is 3/4 of the battle). And as rough as looking for more work may be, the fact that I actually can look for more work, is a gift I mustn’t take for granted.

Who can say why I was spared a worse fate?

Who can say why I was knocked out for only a few minutes, rather than a few hours?

Who can say why my fall out of that tree in 1980 didn’t break my back?

Who can say why the hits I took in high school sports weren’t more serious?

Who can say why my car accidents derailed me for a shorter time than others’ do?

Who can say why I was able to hop up after my fall in 2004 and say, “I’m okay… I’m good,” and get on with my life — even if the getting was a lot less good than it was prior to my fall?

I don’t have the answers to those questions. And there’s this little voice in my head that’s warning me away from comparing myself — favorably or unfavorably — with others and their situations. We all have our challenges, and we all have our limits, and it’s not really for us to judge which is better or worse, which is easier or harder, or even if we deserve what we got.

All I know is, things haven’t been easy for me. But they haven’t been as hard as they could have been. I’ve been spared, and while I do wonder why I rate that, the bottom line is that my difficulties have made it possible for me to understand what it’s like to struggle terribly with things that others cannot see. I know, first-hand, what it’s like to be lost and alone and afraid and totally invisible to the rest of the world. I know what it’s like to live, day after day, wondering if I’m going to lose everything because of some mysterious difficulty I can’t put my finger on. I know what it’s like to be abandoned by people who were supposed to help me, and treated like shit by mean-spirited people. I know what it’s like to be preyed upon because someone senses I am at a disadvantage in life.

And since I know first-hand what all this is like… AND I am still pretty high functioning, I’m in a really great position to help. My brain is broken, sure. But my brilliant mind won’t quit. And since I can write and use this blog and I know how to get the word out online about this TBI stuff, it puts me in a really great position to educate and inspire and hopefully assist others.

God, but this world can be a lonely, confusing, depressing place. But in the worst of times, it’s so very important to identify our strengths and our gifts and pitch in to help others who are in need. I haven’t the faintest idea why I have been spared the fate of so many others like me, who had the same types of experiences but have it much worse. But it’s not for me to know.

All I can know is, I’m a survivor (dammit!), and I have abilities and talents and resolve that I can put to good use for others. I have an extra hour or two in my day that I can spend blogging before I go to work. I have a job that lets me grab a few minutes, here and there, througout the course of my day to examine my life and figure out what works — and what doesn’t — with regard to my broken brain. I have been given  wonderful gifts of resiliency, determination, stubborn faith, insatiable curiosity, and the ability to overlook my own personal pain — physical and emotional — in the service of a cause greater than myself.

I know how to function in this life, in spite of a long history of brain injuries and the personal/physical/social/emotional/financial complications that arise from them. I’ve devised coping strategies (usually from sink-or-swim situations) that have really worked for me. I’ve figured out how to find jobs and stay employed, how to make money and pay for big-ticket items, how to appear functional in the world, how to interact with people well enough to get by, how to support my memory and work with my uncooperative body, and more. I’ve had to face down a lot of real challenges, but somehow I’ve managed to overcome them. And I love to write… so what better position could I be in, than to blog about it all and hopefully toss someone a little help from my own personal experience?

So, rather than sitting around and feeling unworthy and useless and undeserving because I’m able to function well, while other flounder and founder, I think I’ll just get on with my life, get on with my day, and use what I learn for the benefit of others.

God knows, we can all use a little help. And what a shame it would be, if I were the only one who benefitted from the lessons I’ve learned!

Hitting the 10,000 mark today

I just checked my blog stats, and lo and behold, I’ve reached the 10,000 hits mark.  Actually 10,092, but what’s a few more? More is good! 🙂

I’d just like to take this opportunity to thank everyone for stopping by. This journey is a solitary one for me, as it is for so many tbi survivors, in part because brain injury is so baffling to the person who’s been hurt, and in part because our society is still woefully ignorant about the true effects of brain injury and doesn’t have a lot of tolerance for people who got hit on the head and aren’t able to just jump up and say, “I’m okay — I’m good.

Given the kinds of comments that people leave, TBI really is a big concern with a lot of folks — especially those affected by injuries in the wars in Afghanistan and Iraq… returning soldiers and their families and friends and coworkers… and more. And given the amount of traffic over time, it seems to me that interest is really picking up and people are getting pro-active about dealing with TBI — either their own, or a loved one’s.

This really makes me happy. (Not that TBI happens, but that there’s more interest and information.) Over the years, as I’ve experienced injuries, I was unable to get the help I needed, first because 35 years ago, people didn’t know much about this brain injury stuff. And later because I wasn’t able to accurately self-assess my own situation and see that I needed help.

Now, with more and more info getting out there, more blogs, more websites, more YouTube videos, people are better able to find the help they need — either online, or through live resources they locate by online means.

Hitting the 10,000 mark is so invigorating for me! And it’s helping me focus more — on life outside my broken brain. It’s all too easy for me to slide into my “pity pot” and bemoan my fate… when (relatively speaking) I’m doing way better than a lot of folks out there. I’m not making light of my own difficulties, but I have to get some perspective at times and realize that A) I’m not the center of the universe whose pain matters more than anyone else’s, B) I am extremely fortunate in many respects, and C) that because of both my injuries and my recoveries and my unique abilities, I’m in a position to reach out to others who are in need and offer them some of what I have.

10,000 hits is a great sign that “feeds me” and lets me know that I’m doing something constructive with my time and energy. And it also reminds me of my responsibility (a “calling” if you will) to those who are reaching out for help, with all those search engine terms and queries and all those clicks on tags… looking… searching… seeking clues that will explain the mysteries of the mind and strategies for living life to the best of one’s ability.

And now it’s time for a contributory post. Enough about me… What about you?

i think i’m in love with my therapist

Actually, I’m not, but I keep finding this search phrase in my stats, and I just have to comment on it. It comes up so often, that it surely must be a common theme in people’s lives.

Interestingly, in my research about pain and analgesic stress, I have come across some research and writing about brainwashing or mind control that may shed some light on this.

I am NOT saying that your therapist is trying to brainwash you or control your mind. But I may be able to shed some light on why this is such a common occurrence.

After all, someone falling in love with their therapist — or their therapist falling in love with them — is part of our cultural landscape. It is portrayed in movies, it’s discussed in books, and yes, people search the web about this issue — apparently, a lot.

Okay, at the risk of oversimplifying a pretty intricate, complex, and touchy subject, here’s how I understand the “love thing” happening in a psychotherapeutic context:

First off, as I understand it, regression is a process of “returning” to an earlier state of mind — kind of like accessing your inner child — so that you can tap into experiences and feelings at an earlier stage of your life and deal with previously traumatic or unsettling life events. There have been different views on regression over the generations — some conceive(d) of it as a defense mechanism that people use to avoid dealing with painful memories. Others see it as a necessary part of the psychotherapeutic process. Some therapists really pursue “getting in touch with the inner child” in order to heal old wounds. My own therapist is keen on me doing this — however, I’m largely resistant to it, for specific reasons, which will become evident below.

Now, regression has other “uses,” besides allowing someone to heal. It is also used in interrogation/torture circumstances, where a subject is resistant to “standard” interrogation techniques, and they need to be “broken down” in order to reveal the information sought. The CIA’s KUBARK Counterintelligence Interrogation manual states:

Obviously, many resistant subjects of counterintelligence interrogation cannot be brought to cooperation, or even to compliance, merely through pressures which they generate within themselves or through the unreinforced effect of the interrogation situation. Manipulative techniques – still keyed to the individual but brought to bear upon him from outside himself – then become necessary. It is a fundamental hypothesis of this handbook that these techniques, which can succeed even with highly resistant sources, are in essence methods of inducing regression of the personality to whatever earlier and weaker level is required for the dissolution of resistance and the inculcation of dependence. All of the techniques employed to break through an interrogation roadblock, the entire spectrum from simple isolation to hypnosis and narcosis, are essentially ways of speeding up the process of regression. As the interrogatee slips back from maturity toward a more infantile state, his learned or structured personality traits fall away in a reversed chronological order, so that the characteristics most recently acquired – which are also the characteristics drawn upon by the interrogatee in his own defense – are the first to go. As Gill and Brenman have pointed out, regression is basically a loss of autonomy. (13)

(bold emphasis added)

So, there are positive and not-so-positive uses of regression — both of them basically two sides of the same coin, as I understand it. The therapist and the interrogator are both urging the subject to return to an earlier point in their life, so that they can reveal the desired information. For the (principled and well-intentioned) therapist, it’s info about earlier events in life that are stopping the client from moving forward in life. For the interrogator, it’s info that’s politically or militarily privileged that they need to extract from the prisoner.

Now, one thing that happens in regression is that — after the “holdout” person has been on the hot seat (in therapy or in interrogation) for some time — they can form emotional attachments to the other person who’s questioning them. They can see them as a parental figure. Or they can form some other kind of emotional attachment to them… especially if that other person can offer (or at least seem to offer) relief or reassurance in the face of physical and psychic trauma.

A prisoner who has been beaten, waterboarded, threatened, put in solitary confinement, deprived of sensory input (like daylight or access to clocks) and separated from regular routine (like regular sleeping and eating times) may regress back to a semi-infantile state. And when an interrogator shows up (the good cop) and offers them an alternative to the bad cop torturers,
they can form a strong emotional bond with them — as a parental figure or some other emotionally significant personage.

From the KUBARK manual:

The skilled interrogator can save a great deal of time by understanding the emotional needs of the interrogates. Most people confronted by an official — and dimly powerful — representative of a foreign power will get down to cases much faster if made to feel, from the start, that they are being treated as individuals. So simple a matter as greeting an interrogatee by his name at the opening of the session establishes in his mind the comforting awareness that he is considered as a person, not a squeezable sponge. This is not to say that egotistic types should be allowed to bask at length in the warmth of individual recognition. But it is important to assuage the fear of denigration which afflicts many people when first interrogated by making it clear that the individuality of the interrogatee is recognized. With this common understanding established, the interrogation can move on to impersonal matters and will not later be thwarted or interrupted — or at least not as often — by irrelevant answers designed not to provide facts but to prove that the interrogatee is a respectable member of the human race.

Now, I’m not saying all therapists are like torturer interrogators, but on some level, they may employ interrogation-like techniques for the sake of getting to the bottom of deep-seated emotional issues. And just as their techniques may mirror those of interrogators in some ways, the response of a regressed client can mirror the response of a prisoner who has been subjected to torture — they may emotionally attach to someone who offers them relief from their physical and psychic pain (Note: physical and psychic pain are sometimes all but indistinguishable, but that discussion requires another extended post).

It’s not that the therapist is necessarily trying to take advantage of their client (though some do, and I’ve encountered therapists like that). It’s just that the human system responds in certain ways to certain stimuli and input, so falling in love with your therapist, especially when you’re in the midst of some very intense work and you’re ultra-vulnerable, may be the most natural thing in the world.

However, I have to say that depending on the therapist, this might not be such a healthy thing. It all depends on the person you’re working with. If you know they can be trusted — not “if you trust them” (which is an emotional and subjective approach), but if you know they can be trusted (which is more of a logical, objective consideration) — then you may be safe enough regressing with them. But if you have any concerns about the ethics of your therapist and their motives, you may want to avoid regressing back to a vulnerable state with them… and start looking for another therapist.

I’ve known people who fell in love with their therapists — plenty of people do — and trust me, it wasn’t always pretty.

Regression and its uses in interrogation… just something to keep in mind.

Have a happy day 😉

A Perilous Relief: Risks I Took that Turned Out Badly

Throughout my risk-taking career, I have not only taken risks that paid off or that I barely escaped, but I have also taken a number of risks that failed to deliver on both small and large scales. And I have made choices, especially with regard to work and associates, which some would consider extremely risky — and I lost the silent “bet” I made with myself that everything would work out great.

For some reason, I tend to gravitate towards people who I should steer clear of. Either they are so different from me, we don’t have much in common that will stand the test of time, or they are just plain no good for me. They aren’t on the same wavelength as me, they don’t agree with my philosophies, and even worse, they judge me for my beliefs, they are really hard on me, and the courtesy I extend to them is never returned, only repudiated. I have had a number of long-term friendships/relationships that grew increasingly hostile because my friend/lover was totally at odds with me, and as the relationship progressed and the divide between us continued to widen, they began to act out aggressively towards me when I didn’t fit with their world view. It’s a little daunting (and depressing) to think about it, but there it is.

For some reason (that has eluded me for decades), I don’t seem to gravitate towards people who are in synch with me. There’s just not much of an attraction there. I don’t get the same “charge” from people who are like me, and I don’t seem to find them very interesting. We may have plenty in common, but the more compatible with someone I am, the less interest I have in them. Rather, people who are on the opposite end of the spectrum, philosophically and ethically, attract me like a magnet attracts iron shavings.

The thing is, I often don’t even realize the chasm between my own personality and theirs, until I’ve developed a substantial relationship with them. This happens at work, as well as in my personal life. And once I realize how at-odds with them I am, our relationship has taken on a life of its own, and I’m “stuck” with them — and they with me. The problem is, I tend to be a lot more accommodating of others’ differences, than they are with mine. So I end up on the wrong end of the deal, getting the brunt of their neglect/abuse/maltreatment/judgment — you name it — while they happily romp all over me.

Ironically (for I am actually a very self-assured and assertive individual), I often feel very comfortable in those kinds of situations. In fact, I sometimes feel better in situations where I’m being mistreated, than when I’m totally accommodated and accepted. The problem is, the mistreatment takes a toll, and eventually, I buckle under the pressure and say/do something that puts me completely at odds with the folks I don’t synch with. And when I melt down, I look like the “bad guy” because all along, nobody had any clue that I wasn’t okay with their perspectives and/or behavior, and they had no reason to change, because I didn’t make an issue of it. They have no clue they are part of the problem, because I am able to stay cool as a cucumber up to a certain point, and I’ve never indicated I felt that way. The only indication they have that things are amiss, is when I blow up, melt down, pitch a fit, or say/do something that is not only unprofessional but insubordinate and uncollegial.

At the risk of totally depressing myself, I’ll outline just a few instances of this kind of behavior.

Professional Danger-Seeking Activity That Went South

I have held a disproportionately large number of jobs working for bosses or companies that were not a good fit. In the best of cases, they were mildly annoying and were an inconvenient way to make a living. In the worst of cases, they were abusive, neglectful or outright hostile to me. I have stuck it out with rake-you-over-the-coals-type employers with widespread reputations for being “burnout shops,” and I have put in many hours working with abusive sons of bitches who didn’t evidence a single kind bone in their bodies.

But despite all my bad experiences, I have persisted in choosing jobs that were bad fits for me, including jobs at companies with commutes that I knew were too long for me to make comfortable, twice a day, five days a week, and positions with companies that were so at-odds with my own moral code that I came to loathe myself for working for them within weeks of taking the job. And despite my discomfort, I have persevered at those jobs, irrationally successful in extremely harsh environments, despite my best intentions to protect myself… this time.

I also have a history of gravitating to employment situations that had very little security and substandard compensation. I would take work as a contractor with a company that had a history of summarily dismissing contract staff, or I would take a position that paid me less than I could easily command on the market with my skills and experience.

Typically, I would thrive in those kinds of environments for a number of months… until I began to exhaust myself — and started to say and do things that put my job and professional standing in danger. I would start to be disruptive in meetings, stop meeting my deadlines, become argumentative, even combative, with people whom I found increasingly distressing, and in some cases I would become downright insubordinate and start to foment dissent and agitation in the ranks. I would start to pick fights, stop being so long-suffering and accepting, and despite my better judgment and intelligence, I wouldn’t be able to stop myself. What’s more, despite my decreasing job satisfaction, I would take on more and more responsibility, overburdening my already taxed system, and eventually I’d burn out or flame out or become physically ill (which impacted my ability to think rationally and act responsibly)… all the while being unable to halt my downward slide – or even accurately detect it till it was too late.

Looking back, I can see how I have really paid, time and time again, for my poor choices in ill-fitting work. But despite my best intentions, I end up working with people and companies, over and over, who are not good fits for me, doing work that is neither challenging nor as financially rewarding as it should be. But I can’t seem to resist the draw of those types of scenarios. In fact, I have often actively sought out those kinds of work environments — against my better judgment, my past experience, and the urgings of my friends, family and co-workers. Although I am well aware of the risks involved and I have had more than my fair share of wishful thinking failure-dramas, when it comes to seeking out new work, I have to actively discourage myself from being involved in pie-in-the-sky too-good-to-be-true job offerings, and I have to make a concerted effort to seek out stable employment.

  • At Risk: Employment, job security, personal happiness
  • Dangers: Unemployment, poor working conditions, professional backlash from jobs gone bad
  • Rewards: Satisfaction of “being able to do it” and “hanging tough”, continued employment, acquired ability to function in a wide variety of work situations, respect of professional peers
  • Outcome(s): Continuous employment, financial security, repeated screw-ups in job choices, intermittent and recurring job dissatisfaction

Personal Choices that Sucked

In my personal life, I’ve had a long history of bad choices, as well. I have gotten into a number of relationships (romantic and otherwise) which were not in my best interest. They weren’t good ideas when I was initially attracted to them, they weren’t good ideas when I started them, and they just went downhill, the longer I stayed with them. To the untrained eye, in some cases, the friendship/relationship looked like “the right thing to do.” The other person “looked good on paper” or was very popular, or they were the kind of person that other people said I should be with — but no doubt about it, it was a bad match. And I was drawn to the dynamic like a moth to the flame.

In a number of cases, my friend/partner was so completely different from me, so at odds with what I thought a decent person should be like, and quite aggressive about their take in life, that I ended up first getting swept up in their own life and perspectives, and then I got bullied into sticking with them, just because they had grown attached to me (and my wallet). How many times I’ve ended up being friends (or lovers) with someone whose main interest was in how much stuff I could buy them and how obedient I was to their whims, I’m embarrassed to say. But it has happened. Over and over again. And each time, I’ve been dismayed and horrified to re-realize that I was repeating old patterns. Over and over again.

  • At Risk: Personal happiness and fulfillment, financial well-being, personal autonomy & safety
  • Dangers: Being trapped in bad relationships, abuse, exploitation by friends/partners, self-loathing
  • Rewards: I’m rarely alone, continuous relationships, popularity
  • Outcome(s): String of “good things gone bad”, decreased self-esteem, long history of interpersonal lessons learned

A Perilous Relief – Table of Contents


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An Army of Lost Souls

Great post over here — http://uoflama.blogspot.com/2009/01/army-of-lost-souls.html talking about Veterans’ issues, specifically PTSD.

It’s incredibly troubling to me, that so many veterans are lost between the cracks, and that so many are returning from the wars we have going on in Iraq and Afghanistan, with serious, life-altering injuries that are not only invisible to the rest of the world (until they show up in their behavior and changed abilities), but may also be invisible to them, depending on how aware they are about their TBI(s) and how they deal with it.

The VA may intend to help our veterans, and our society may in fact have promised to provide lifelong healthcare to them, but the complexities of not only PTSD but also TBI, and the fact that they can so often co-incide, doesn’t make me very hopeful about the prospect of this happening with nearly as much effectiveness as it should.

In the absence of adequate medical care (which suffers not only from beurocratic red tape, politics and organizational inefficiencies, but also from the criminal dearth of information about these very-common conditions — I mean, come on people, folks have been getting royally screwed up by war and smashed in the head for as long as there has been armed conflict!), I think that we as a society need to come up with some better ways of dealing with this.

One way that I can think of, is the blogosphere. The internet. Say what you will about “egocentric amateur bloggers with nothing better to do than blog, and no professional reportage qualifications to speak of”, but we’re actually the ones who are making valuable, pragmatic, experience-based information we possess available to others in need of help. And we’re offering it for free, without requiring an appointment set or a referral from a primary care physician or specific insurance coverage. We have the most precious thing(s) to offer to someone in despearte need — information, experience, and proof that someone can — and does — survive terrible things. We’re laying our personal experience, strengths, hopes, fears, realities, coping mechanisms, out there in full view for all to see, and we’re doing it not only out of ego, but from a genuine desire to help others. And anyone who knows how to find us — at the local library, on their work computer, on their home laptop — can access what we have to give.

It’s Sunday, which in the world where I was raised, it’s a day of rest. And I will rest soon. But for now, I’ll perform an act of service and put links to search results for tbi and ptsd-related blog posts in the left margin of this blog.

It’s the least I can do for the folks who sacrificed their very brains for our nation — as well as anyone else who needs to find help.

What a difference a year makes…

Well, it’s been a year, since I started this blog. It’s been a little over a year since I first came to terms with the fact that my psychological/cognitive/behavioral/emotional issues can be traced back, in no small part, to the array of head injuries I’ve sustained over the years. In a way, it was a relief for me to realize it. It was a relief for me to realize that the way that I was had a reason. That the way that I am can be explained. That I’m not the only one who struggles with this, and that I’m not the only one with the whole array of otherwise confounding issues that I have a really hard time explaining to others.

Thinking back, knowing now what I know, I’m amazed I didn’t put two and two together sooner. Then again, I had no reason to. In fact, I had plenty of reasons NOT to put it all together. This type of injury does a great job of hiding itself away. It’s the kind of injury nobody wants to have, not many people want to acknowledge, and not many people want to talk about — unless they have one. And even the people who have had TBI’s are not always able to discuss their situation clearly. Because the very part of us that grasps concepts and explores them and initiates discussion, is the part that’s broken.

Broken brain, indeed.

But at the same time, let’s not forget the amazing resilience of this organ atop our shoulders. As Norman Doidge amply illustrated in his great 2007 book The Brain That Changes Itself (which was the first book that made it safe for me to consider that I had neurological challenges and really has credit for helping me to objectively and intimately explore my issues), the human brain can — and does — alter itself, modify its processes, remap its pathways, in countless, subtle ways, so that the body it lives in can continue to function and participate in the world that feeds it.

When I started this blog, it was my intention to not only talk about my life as a high-functioning, long-term multiple mild tbi survivor, but to also talk about my life as a person. As someone who is more than the sum total of their individual parts. As a person whose mind and spirit remain remarkably intact, in spite of the injuries my brain has experienced. I wanted very much to show the difference between the brain and the mind — the difference between the organ itself and that mysterious, even mystical, part of the self that reasons and directs and drives and experiences and emotes and instigates and reacts and loves and, well, lives.

I wanted to show that even if you have gotten hit on the head, been knocked out by a fall or a blast, taken a hard hit and recovered more slowly — and very differently — than expected (or desired), or you’ve wrecked your car or crashed your bike or been thrown 50 feet by an impact, you still have value as a human being, and there’s literally no telling just how much of yourself you can get back — or how much of yourself my may discover for the first time.

I wanted to put the everyday life of an mtbi survivor out there, as best I could, so people like me — who are often isolated and confused and frustrated and in some ways utterly beyond help — can have a place to see their experiences mirrored, to hear their calls echoed, to have written proof that there is someone else out there who is dealing with this very challenging, often troubling, sometimes rewarding condition in a very present, very active way.

And I had hoped that maybe, perhaps, some psychotherapists and/or doctors and/or teachers and/or folks in law enforcement might stop by to take a look at this online journal to familiarize themselves a little bit more with what it’s like to be on the inside of a broken brain. Maybe, just maybe, they might be able to learn something from reading these words that they either are too proud to ask about, or they didn’t realize they needed to learn.

It’s all but impossible to know if I’ve succeeded at any of this. I’ve gotten comments back from folks about how reading my words has helped them, or that I’ve provided a great service to others. But the blogosphere is in pretty short supply when it comes to completed feedback loops, so I just have to trust that whatever I’m putting out there is of some benefit to someone, somewhere. The only real gauge I have of my contribution is thinking whether or not it would have helped me, years before, when I was really struggling with the after-effects of my accidents/falls/other injuries, and didn’t even know where to look for help.

I figure, if I feel like what I’m writing would have helped me, it may just help someone else out there. I know that, as of this date, over 8,800 page views have taken place. I’ve approved 103 comments. Akismet has protected me from 7,560 spam comments, and the most views I’ve gotten on any one day in the last year has been 125. I’m not the most popular blogger out there, and the vast majority of people out there have no clue that this blog exists. But I continue to post, doing my best when I can. And I hold out hope that this may be doing someone out there some good.

I know it’s helping me.

Because blogging, quite frankly, is an answer to my prayers. For many years, as a kid, and then as a young adult, I dreamed of becoming a published author. I told myself I was an artist and I was a rebel… never mind that my art often had more to do with relieving the pressures of living with undiagnosed neurological issues, than contributing to the outside world. I dreamed of putting my words out there for others to read, even if it meant not making a lot of money or garnering much fame. Money is nice, but fame I’ve rarely craved — and then, only in the eyes of those I hold in the deepest respect.

As my TBI-related difficulties soured and destroyed one publishing contact after another, one professional relationship after another, I slowly relinquished my dreams of being published, and I became convinced that I was pariah to the literary world. In many ways, I was. I mean, I had some really excellent opportunities to be published, but I could never follow through or get myself straightened out well enough to make good on them. I was beyond help. Literally. And everyone who dealt with me probably thought I had deep-seated emotional/psychological issues — with good reason.

Well, today I know better, even if they don’t. Today I know better than ever where I stand, and the parts that I don’t know enough about, I’m finding out about. And today, I can sit here in my “infirmary” — a makeshift bedroom away from the rest of the household, filled with liquids and pills and tissues and steam form the humidifier — and write words that will be seen. Because I’m online. Because I have something to say. Because others find me through search engine searches and WordPress tags and links that people email to them. I can look at my dashboard and see who’s looking for what information — PTSD, TBI, temper, employment issues, pain, emotional turmoil, overcoming tbi, mental illness and brain injury, and more — and I can speak to what they are looking for. From my own experience. From my own life. From my own corner of this big, wide, incredible world where everyone is pretty much grasping for answers, about now.  I can surf tags to find out who’s talking about what I’m talking about. I can surf other blogs to see what others are saying. I am anything but alone, in these days of WordPress interconnectedness, and for once in my life, I can know that I am joined with others, through even the finest of gossamer threads. But I am joined.

One of the interesting things about my TBI experiences and after-effects
is now it both connects me with the world and separates me from it. On the one hand, like Kara Swanson says over at her blog, a brain injury can teach you a whole lot about compassion and help you extend it to people who you’d otherwise dismiss, or diss. It can humanize you (as my partner says it has me, since I really came to terms with it over the past year), it can make you more approachable in some ways, and it can make you have much more appreciation for the parts of your life that function well, in the face of so much that doesn’t.

On the other hand, it makes interacting directly with the rest of the world pretty difficult at times. For example, I keep my identity secret in this space, because I don’t have the resources to navigate the intense interpersonal demands that personal familiarity makes on me. There’s something in my brain that just short-circuits, when there’s too much in put. I also don’t do much reaching out to others (which probably limits my readership) because I run out of steam and I fail to fully sustain my connections with other people. I end up looking/sounding a bit flighty, as well I am, because I not only lose my place with where I’m at in the contacts I’ve made with people (who answered whose email last? who commented on my blog post that I haven’t yet responded to?), but I also tend to forget about them, period. There’s a reason my blogroll is somewhat limited. I forget to update it. And I forget that I need to update it. Social networking is all very well and good, but it requires a level of involvement that I simply cannot sustain. And if I try — which I have, in the past — I just screw it up, one way or another.

Oh, well…

The bottom line is, in this space, I can write. And online, others can find my writing. Perhaps not as many as I would like, but enough to bump up my stats each day. I’ll just keep plugging, try to stay true to my cause, and sustain what level of honest detail I can, along the way. In the end, even if no one ever reads this, it helps me. Tremendously. And that, in itself, is well worth the effort.