Completing the rewiring

Well, my old therapist (OT) has now retired, and it’s time for me to get on with my life. OT helped me a tremendous amount, while I was dealing with the initial shock and dismay of the dawning realization that all has not been well in my life, in many respects… and head injuries had a lot to do with it. The availability of a living, breathing person who could sit with me while I talked my way through the ups and downs of the past couple of years was incredibly helpful. And I will miss OT keenly. I already do. My New Therapist (NT) is smart, highly educated, experienced, and apparently quite aware of the level of foolishness that can come from my mouth at times. OT has already talked me back from the edge of really ill-informed decisions/actions several times, and I’m the better for it.

Much as I do mourn the loss of OT — and it is a loss — I do want to get on with things, and stop spending so much time getting in touch with my emotions. I have logistical issues to address that can’t wait. And I need to work with someone who understands that, who understands my unique mental health profile in terms of physical injuries, rather than mental illness of some kind. There are actual structural issues going on with me that have mucked up my thinking and decision-making for a long time, and I need to get myself on a better track.

NT is helping me do that, as only a neuropsychologically oriented therapist can do. A regular “talk therapist” — no matter how kind-hearted and well-intentioned and psychologically experienced — will be limited in what they can offer me… unless they really understand the TBI aspects of mental health.

See, here’s the thing — after having gotten hit on the head a bunch of times as a kid, it seems to me that my development was altered by those head injuries. The thoughts and impressions I had, growing up, were skewed by my traumatized brain, and because I was reacting to and dealing with situations that weren’t actually “true” representations of what was going on, my social and emotional development got skewed, as well. I had such intense, precipitous reactions to so many things, when I was a kid… and that certainly must have shaped me in unique ways. I think it’s fair to say that when I was growing up, I was having a very different experience of childhood than my siblings and peers, so that shaped me in very different ways into my teen years and my adulthood. Which made me a different kind of person — a kind of person very few people understood that well. I’m not sure anybody did, to be honest. Including myself.

I suppose you could say I was developmentally delayed in some respects.  But in others, I leaped ahead of everyone. Looking around me now, I can’t say that my different development has handicapped me. But it has skewed my perception and interpretation of reality — or, at least, my life experience. And because of that, approaching my emotional and mental health is a different matter than doing so with other people who grew up in regular ways with un-injured brains.

Working my way (slowly) through the Give Back Orlando ebook  Self-Therapy for Head Injury I’m really struck by the talk about how an injured brain can get jammed in the “all-clear” position and not realize that it needs to go from autopilot to thoughtful/careful mode.

I quote from Chapter Two: Head-Injured Moments:

~Note: (bold) is mine~

Most of the head-injured moments happen at times when thoughtful/careful mode is needed but the damaged brain doesn’t see that. The most serious problem in TBI is the breakdown of the system that watches to see when thoughtful/careful mode is needed, when the automatic pilot needs to be shut off. After TBI, the brain misreads the situation, fails to see the need for thoughtful/careful mode, and instead stays on automatic pilot. That causes the person to say or do things impulsively, while feeling as if what he or she is saying and doing is perfectly correct. The behavior comes out wrong, but the survivor is left feeling confused about why everyone is getting upset. The reason why is that we are expected to shut off the quick-and-dirty autopilot mode when something important needs to get done properly. In ordinary life, only a slob, or a jerk, or a loser, or a person with a bad attitude–someone who doesn’t care enough to be sure to get it right–would use the quick-and-dirty method when the stakes are high. Consequently, employers, friends, and family end up getting annoyed and then outright angry with the survivor for being so careless. It may take months or even years, but eventually the people in the survivor’s life begin to give up on him/her because of this failure to use normal quality control, this failure to try hard enough to get things right that really matter. Even though the head-injured moments are rare, they have a huge impact over the months and years. And if you watch for them and write them down, you can start to learn how to fix them.

This is really big for me — the last part, especially. It’s big, because here is someone who clearly knows about the chief vexation of my life — my repeated experiences with screwing up without intending to or realizing I had, until after the damage was done… after the words were said or the job was mucked up or the story/joke was told wrong or the errand was forgotten. And the experience of having people just give up on me over time. Parents, teachers, bosses… all the folks along the way who had such high hopes for me, only to see me mess up, time and time again, for no apparent reason.

Laziness? Carelessness? Cluelessness? Who could say? All anyone knew was, I screwed stuff up. All I knew was, if I was given something to do, chances were, I’d mess it up royally the first time around… and have to work my way back like crazy, just to get back to an even keel.

The one thing I’ve had going for me, over the years, is my indomitable spirit. Nothing gets me down for long — not sure if it’s a superior character or the inability to maintain my focus on negativity for very long 😉  (There’s something to be said for being easily distracted — my attention can be pulled away from misery just as easily as it can be pulled away from a task I’ve just started, which is an added bonus.) I’ve always had this sense that, if I just kept going — and used whatever resources were given me — eventually, if I just stuck with it and didn’t quit, I would find a way through.

And it’s been true, for the most part. I still mess up… but I’m doing something about it. And the Give Back Orlando material is an amazing tool to help me take my recovery even further. (Please keep in mind, that I’m only two chapters into the Self-Therapy guide, so my opinion may change later.)

Anyway, back to the rewiring…

I’ve felt for some time, now, that traumatic brain injuries need not be final. Ever since I read Norman Doidge’s book The Brain That Changes Itself, I’ve been convinced that TBI is not the end of the story. Now certainly, some brain injuries are so severe and so thorough that there’s no turning back. But in countless cases, I believe that neuroplasticity (where the brain rewires itself or re-routes/re-maps certain functionality away from injured parts to healthier, more capable areas) can result in restored abilities. The abilities may not be the same, but they don’t have to be gone forever. Different parts of the brain can literally step in to pick up the slack for injured parts… those “parts” being somewhat diffuse and multidimensional in the brain’s own mysterious, inimitable way.

There’s a whole lot to this concept of neuroplasticity — more than I have time and space (and available memory) to fill in here. But the bottom line is, the brain is capable of rewiring itself. And when you sustain a TBI, whether it’s mild or moderate or severe, rewiring is necessary, in order to regain functionality. If the brain doesn’t get rewired, if it doesn’t heal, if it doesn’t evolve and shift to rise to the demands of life outside the skull, then you’ve got problems.

And when you’ve had a TBI, you often don’t even realize that there are problems to be dealt with.

So, you end up spending an awful lot of time wondering why people are mad at you, why your life is all turned around, and where all the money in the bank got to.

I’ve been in that type of situation more than I care to admit. And I still have a lot of territory to cover. It’s a bit daunting at times, because the skewed interpretations of “reality” began with me at a pretty young age, and I have been intermittently (and unpredictably) misreading signals for a very long time. But the point is, now I know there could be — and probably are — issues with my perception that need to be ironed out. I now know that my brain needs to be retrained. Remapped. Rewired. It’s been getting rearranged, on and off, for over 35 years, now, and I still have a ways go to before the wiring is “up to code.”

Now, I know that this “job” of living my life is never-ending. But I like to think of it as a Herculean, rather than Sisyphean, effort. Hercules was the guy who completed his 12 tasks and cashed in. Sisyphus was the guy who kept rolling that boulder up and down the hill, over and over, for ever and ever, no sooner getting it to the top, than it rolled back down. At times, I’ve felt like Sisyphus, but that’s been a feeling, not a fact. In truth, my Herculean efforts — fighting monsters and hauling heavy loads and plowing fields and whatnot — have paid off a great deal. And for all my screw-ups, I have had a lot of successes.

That’s what I need to remember at times, when everything seems to be going to hell, and I’m sitting around feeling sorry for myself. Woe is me… my therapist has left me… woe is me… I’m getting confused and turned around at work… woe is me… I’m exhausted and can’t seem to sleep through the night… woe is me…  Yada yada yada…

This life is a work in progress — emphasis first on work, then on progress. But it is both. I am no stranger to hard work, and I’m not afraid to get my hands dirty. I’m also not afraid to look at my demons and dance with them. I’m not going to let them lead me on the dance floor — this dance is more modern and interpretive than a tango or walz. But it is a dance, no less.  And I need to not get my heart set on sitting on the sidelines while the best that life has to offer passes me by.

Certainly, there is a lot of work to do. But might it not be possible to have a good time, while I’m working? I grew up in an area where there was a lot of farming… a lot of work. People just did what they had to, and you didn’t bitch and moan about the loads you carried. Everyone just assumed that life was full of heavy lifting and hard lessons, and nobody mooned and boo-hoo’ed and wailed and gnashed their teeth about it. Life = Work. That was the deal, and if you didn’t like it, well tough nuggies.

Consequently, people went out of their way to figure out how to make that working way of life into something rewarding and uplifting and fulfilling. There was family and church and good food and community activities and service. There was reward in doing good work and in a job well-done. People didn’t try to get out of doing things — they found ways to make doing things more enjoyable. By turning on the radio. By singing. By coming up with games to play while finishing a job. By contemplating some idea. Or just by getting into the business at hand and immersing themselves in it 100%.

In a way, I miss that orientation in life. The area where I now live is full of great people, but a lot of them are well-to-do and spoiled and unaccustomed to hard work. They somehow think they’re exempt from exerting themselves. In fact, much of this country seems to be like that. People are so accustomed to convenience and customization, they just assume that all the world is going to modify itself to meet their specifications. They’ve had hardship in life. They’ve suffered. People have been unkind to them or hurt them — physically, mentally, spiritually, emotionally — and they deserve a reward or a “break”. And I find myself sometimes slipping into that frame of mind, too — because I’ve had unfortunate things happen to me, I should be somehow compensated. I should have an easier schedule. I should get accommodations from loved-ones. I shouldn’t have to work my ass off to do  basic things that come easily to others. I should… I should…

But that’s crap, and I know it. I’m a worker, at heart. I grew up working, and I feel most fulfilled when I’ve gotten to the end of a day with all my tasks completed and something to show for them. I don’t shy away from hard work — I embrace it and seek it out. If I hadn’t been head-injured so many times over the course of my life, I might have an easier time of making the most of my abilities, but that’s not how things turned out, and it’s counterproductive to focus on that what-ifWhat-is interests me a whole lot more — what I can do, what I can do about my situation, what I can do to improve, what I can do to salvage and redeem the aspects of myself that really struggle at times.

I’m a worker, plain and simple. And I feel best when I’m not shying away from the challenges that present themselves to me. Everybody has some burden they must carry — whether obvious or hidden. I’m not exception, and I haven’t been singled out by a vindictive universe or a punishing Higher Power as punishment for some “sin” I committed in the past. So, I have it hard at times. So what? Who doesn’t?

I guess the main thing about all this, is figuring out not how to avoid difficulty and challenge, but how to make difficulty and challenge work for me. How to have fun with it. How to be uplifted by it, not dragged down. For me, it’s all about transcendence. It’s not like I’ve got all the time in the world to waste. I do have a lot of issues. I have a lot of pain, I have a lot of confusion, I have a lot of frustrations and anxiety, and I’m at a big cross-roads in my life with no idea which way to turn.

But I’m still here.

A friend in their 70s said to me recently, “Don’t forget to have fun, while you can. Life passes so quickly…” It’s true.

Note to self: Today, have fun! No matter what.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

2 thoughts on “Completing the rewiring”

  1. BB –

    Several thoughts to your recent postings:

    I have a friend who over the past few years he has, quite consciously, changed his life pattern – in small but significant ways. Always an early riser he now makes sure to, each and every morning, do a ten to thirty minute meditative practice. He has also built into his schedule a regular routine of exercise. Depending on his work schedule this may also be in the morning or perhaps at some other point in the day. His exercise program is however not intense; it may be a 45 minutes brisk walk or just 20 minutes on a treadmill.. More recently he and his wife decided, for environmental reasons as well as economic ones, to limit themselves to one car. They both work – but through some thoughtful planning, good communication and a bit of flexibility they manage. Part of the solution to one car was that he bought himself a bicycle and some days he rides to work – thus he gains his exercise in this way. Once every few months my friend and his wife take inventory of their house and identify projects that need doing. They select one or two that they feel up to tackling and then schedule time for them over the next few weeks. Sometimes his wife takes a different approach however, she plans a series of small jobs – cleaning one drawer in the middle of the week, sorting the socks while waiting for a cake to bake, that sort of thing. They also plan vacation time, time off, whether to go for a drive or go far away – and they even insure they have simple down times – to watch a movie or read a book or to sit. Both of them are very active and committed to many causes & pursuits, but they decided to limit themselves to a select few. To balance out their commitments they do not take phone calls during dinner hour and they do not take phone calls after 9:30 at night; they do have an answering machine on to allow screening for emergencies. Occasionally a project or commitment will overtake their scheduling; in that case they do have to work through it, putting in extra time, etc – and they draw away from other things. They do not hesitate to say no or to limit socialization when necessary. This allows them to be fully present for their friends when they do socialize or when they are needed. They are very compassionate and humane people and many in the community rely on them for support – emotionally and practically. My friend utilizes a handheld organizer to track his time, while his wife combines paper and an on-line calendar so that they can ‘synch up’ their time schedules. My friend is a very very smart man with a multitude of interests, he is well read and writes periodically and belongs to a variety of organizations as well as a full time job.. His wife too is very bright with many areas of interest and pleasure – from book clubs to gardening to social services and she works about 25 hours a week. They are not as ‘spontaneous’ (or random) as some folks but they do ‘build in’ spontaneity into their lives – that is unscheduled and free time which they use for whatever catches their eye. Nothing about them is predictable, dull or excessively organized – indeed their organization is such that it leaves one feeling they are quite free to do what they want.

    They did not come upon this lifestyle overnight but built towards it when they found themselves getting too frenetic and overwhelmed and stressed. It was a conscious choice of how to live and it required a great deal of effort – and sacrifice of some things. They chose to not play to a certain lifestyle and instead simplified their own. Yet they do not live in a rigid fashion, they have young adult children who come in and out of their lives still, friends, family and life experiences who place demands, often unexpectedly, upon them. They also they have their own issues with work and jobs and mental well being that life throws at all of us. They just realized at some point that they needed to have more balance and more focus in their lives; that they were suffering in some way from the lack of those things. Thus this couple made a series of significant changes in their lives – and they did this by reflecting on what was causing them problems and what was taking away their sense of satisfaction and happiness, as well as what worked for them and made them feel good..

    Neither of these folks have a brain injury – but the kinds of changes they have made are the same ones that get recommended to people with brain injury – things that give structure, consistency and balance. These are ways to insure focus, priority and quality of life.

    To me this is at the heart of what Schultz says. We are recommended to make a conscious move towards balance, consistency and structure of some kind.. But TBI folks have a hard time coming to this – why?

    For myself it is like this – I started off thinking – ‘ok, doc, how long till I am healed?’. Then at some point I started saying ‘okay doc, what are the strategies and compensatory techniques I need to know to get back to my life’. More recently I have come to see that there is no ‘back to my life’. This stage of thinking does not come easily (and I still resist) – after all I feel and look and sound fine. I can do things that many ‘non-tbi’ folks cannot. So why can’t I just get back to my life with effort, tenacity, determination and using a few ‘tricks of the trade’? And believe me tenacity is my middle name.

    But I can’t – and it’s because things are not the same. And the only answer is to change my life. The question now is NOT ‘how to get back to my life’ but is ‘how do I live my life now’ – and that means that I really do have to have a different kind of life, build a different kind of life. Things like pushing ones way through overload, or being Mr/Ms Wonderful and trying to be everything to everyone, or having an exciting and challenging social life, going at high speed, being endlessly spontaneous – all those things that we think are ‘us’ will have to be altered, changed etc.

    I am a multi-tasker, perhaps I was born with a touch of latent ADD, perhaps it is my intellect – but all my life I have been inclined to focus on several things at once. And it was how I literally enjoyed life, it’s the way my mind worked. This isn’t even habit – it is ME. And what is worse is I can still do it.

    But much of the time I tend to do it poorly now – and I might not even notice when I do. Unfortunately I don’t ALWAYS do it poorly (and that’s part of the problem). And so I have to be vigilant about the habit – I fall into it with ease, I get bored with a 10 second delay on the computer and so I turn to something else. As I am doing the rote task of washing dishes I may be figuring out the theme for a paper – in the middle of dishes I will walk away and start writing, maybe even leaving the water running till it floods the kitchen. Hand me an important phone number while I am waiting for an appointment and reading an article for class – and I will never find it again.

    I also have always been an extremely high energy person – not manic but just with an enormous amount of reserve. I wasn’t necessarily cognitively super fast on my feet (though I move quickly) but I had endurance, I could push through hard tasks when others wanted to go lie down. So, unfortunately when I plan things now I do it, even unintentionally, based on the person who can do a 12 hours day successfully. And sometimes I CAN – but the price is much much higher and sometimes I can’t. Or sometimes I rushed through things; In the past I could skim a report and understand it well enough in the 5 minutes before a meeting to speak to it. I walked fast, moved quickly. Now if I skim an article 5 minutes before a meeting it’s as if I never read it. If I move quickly I drop things, misplace them, get confused. There are other traits and habits too – conversation with others came easily, I was (and still am) very astute about others behaviors, knew how to manage the conversation, ask questions, what to speak about, what not. I may have talked quickly at times but I did not overwhelm the conversation.

    So I have this lifetime history of being able to juggle 10 balls at once and keep track of them, an ability to push myself for great lengths. I was assertive but able to manage situations. And naturally now I start off with that as my foundation of who I am. And then things go awry.

    Some of this is lack of impulse control – I succumb to what intrigues or compels so that I am always bewitched by another activity or thought, some of this is that I know my memory is not reliable and I feel a need rush off and write something or start something so I don’t forget it and that comes off as scattered and excessive and hyper, some of it is that my analytical engine is faster than the data in and data out mechanism – and so there is often a pile up of thought and ideas and I just want to get them out so I zip through things including conversations – oblivious to my audience, some of it is that, just as I have broken the filtering mechanism for limiting some sensory input I have also broken the mechanism for identifying priority of ideas and interests. And some of it is that I have discovered the limitations of my cognitive reserve for the first time and I feel pressured to do everything before I run of gas..

    The result of these issues, each only a minor factor by itself, is that I will tend to take on too much, rely on my habituated multi-tasking and high energy levels as I always have when I am a bit jim-jammed, and then…..and then, unlike in the past, things don’t work – and it may take a bit for me to notice.. I am overloaded, make mistakes, have poor judgment, lose credibility beca use I can’t get it done, lose my temper, my focus, my perspective and end up tired and behind the 8-ball and angry at the world. But it all seems reasonable to me as I am doing it.

    (One note about angry at the world – systems, processes etc do not run smoothly, there are absurd obstacles and ridiculous rules and people everywhere in everything. We cannot change that to make it make sense. When you have a tbi you often feel under the gun, you may have financial issues as well so you don’t have room for mistakes. It is HARD to do certain things and hard to explain why its hard – and so when the world does what the world does it pisses us off like nobody’s business. Although our anger may be legitimate it is not always appropriate or effective. Very hard to control this and very regretful)

    So it is that slowly I get this inkling that my life approach must change – it is not simply a matter of learning how to compensate or what tools to use – but my life has to change. It’s important to realize that what is changing is not simply schedules or organization – those are just tools – but my very LIFE has to change.

    Yet, like you I resist this. I hate feeling like, what you describe as ‘being a special needs person’. If I have to change my life it feels like it’s a ‘less than’ life, like I am giving up me. That if I work hard enough and push through I can be who I think I was, who I imagine myself to be – there are no limitations.. Anything else is a cop out life.

    But this is where TBI folks make a mistake. First off, who says the life before TBI was the right one. Or in your case, who knows what is ‘better’ or not. I look at my friends and I think how they came to make these decisions about their life, about how they consciously chose to improve the quality of life, of outcomes, of how they felt etc. Yes, some of it was about adopting tools and strategies but some of it was also just learning to be at peace with this, to see this bigger picture, the longer view – and know that it was a good thing. It’s about how they perceive their lives, about what they think they are doing, about what makes for quality for them. They had to re-write those ideas, create a new mission statement for how to live. And then ask themselves – is what I am doing supporting my mission statement?

    Now I sometimes feel resentful because I have to make changes because of an injury – but so what. Maybe they felt injured by their lives. Mind you, this isn’t about a ‘superior’ lifestyle, this is about the lifestyle that works best for you.

    This is difficult for TBI folks for two major reasons. First we feel that ‘special needs’ thing hangs over us – I do believe that we often have a sense of trying to break free of that label so much that we go out of our way to be better than recovered. That we actually work harder to succeed. To make it easier for me to make changes without feeling like I am losing something I pay attention to how I think about myself. For example, I don’t call myself disabled, and I don’t use the word deficits. It may seem silly but it matters to me how I frame things. I look at my friends and how they made their choices and tell myself I am making the same kinds of choices. This is about quality of life and not TBI or woe is me. I need to feel whole – I need to feel abled – and so I frame myself that way. As you point out, quite correctly I feel, we have no idea of EVERYONE has a brain injury – it could just be a continuum and some have more and some have less. So we may all be in the same post-modern boat of too much concussive activity with a brain that is evolutionarily not prepared to take the beating. Thus, if it can help look at the effort to change, to adopt certain strategies and thinking, to reflect (or make note of as Schultz has it) not as restrictions or limitations but as the analysis tools you use to make the kind of life style selection that works for you. Just as in technology the whiz bang hardware may not always be appropriate for every situation – not all folks will thrive with certain life choices. Find what makes you thrive.

    However the second major issue for TBI folks is that these changes must be made consciously, they must override instinct, habit, impulse. Sometimes they feel awkward – like brushing one’s teeth with the non-dominant hand. But even more we don’t even see what we are doing, we persist in patterns. By the way I think this is true for ANY change – to an individual or an organization. We are creatures of habit, our brains are designed to be maximally efficient when working with habit, instinct etc. This frontal lobe decision making component is very new and very unrefined and not maximized except through usage. Since so much of what we do is a matter of habit we don’t even recognize it. It’s like asking someone to break down how they put on a pair of pants to someone who has never done it. Or tie a shoe. You don’t know, you just do.

    I know a man who is blind in one eye. Sometimes I borrow his car and when I do I always have to adjust the rear view mirror, which he puts at a real skewed angle so he can see. Every time I give him the car back he asks me why I put the rear view mirror at such a strange angle. See he has gotten so used to his visual impairment that he doesn’t see how he skews this mirror – indeed he is convinced its ME who has the problem (he doesn’t loan his car to anyone else so he has no comparison data). Since I have frequently used rental cars I am more aware of the fact that 99% of the time I make very little adjustment to the rear view mirror – most people keep it at a similar angle to what I like – so I do have data – and it tells me that my adjustments to the mirror are probably more in the range of ‘normal’. This is what TBI is like – we see the things that we do as okay, normal, reasonable – but in fact they are skewed to accommodate us – and to us the others are the ones that skew it. It takes an effort to gather data to know what we skew. .

    Because we have this blindness it is hard to even recognize what we do. This is why Schultz says write things down, that is the pattern search tool. Think of it like this:

    Imagine you have a blind spot on your peripheral vision on your right side. What happens to you as a result is every time you go through a doorway you are a little too far to the right and you tend to bump into the door frame. After a while however you don’t think too much about this or just think ‘I’m clumsy’. Then someone notices that you have a lot of bruises on one side and asks you why. You are almost surprised by the bruises since it happens so often you don’t even think of it. But now those bruises are your first bit of data that says ‘hey, something is off’.

    Then, as you observe yourself during the day you discover that you are hitting the doorway 75% of the time. Now you have more data. While you always knew you had a blind spot and you knew that ‘sometimes’ you hit the door way you had adapted to this; you believed it was simply clumsiness (and that therefore nothing could be done) and you never knew it was that often. You didn’t even give heed to the bruises – maybe just telling yourself you bruise easily.

    Now say that another of your traits is that you are a fast walker – so you move at a high speed across a room, maybe you are just a touch hyper in your movements, etc. Now as you try to correct yourself and observe what happens you discover something else – that it is hard for you to re-align yourself properly with the door frame if you walk at high speed – you may even overcompensate and hit yourself on the other side.. In fact the only way to walk through the doorway and not bang yourself is to slow down and then, against your instincts, move yourself slightly to the left. You do this but it feels awkward and you hate walking slow, and it takes a lot of practice to get it working right since it requires you overcome instinct and perception.

    Now if someone had just told you – practice walking slowly and more to the left you would not have success right away, it would feel uncomfortable and you would only attempt it a few times and then quit. And tolerate the bruises. It’s almost annoying to stop and slow down everytime you get to a doorway – and sometimes you say ‘I have no time’ – and then you hit the door frame. But what if it was more than a bruise or what if you had a blood disorder that meant a bruise was potentially fatal? At some point you make a decision for the betterment of your life.

    Ultimately you do get to choose – bruises or practice walking slower with care. The data can help you make that decision, but only you can decide if its right for you. No book, no cog rehab program, no NT, no spouse or anyone can really make you make the changes.

    Unfortunately for TBI folks our instincts and habituated behaviors are hard to overcome AND not obvious to us and so we do not embrace these choices easily. And since our minds will make up stories to convince us that we are okay its even harder. Instinct gets very hardwired PLUS it allows our perceptions to deceive us. This is like sailing a big boat – sail boats are different than cars, they respond much more slowly to the turning of the helm – so it takes a slight turn of the wheel to make a change that will take effect after a few second delay. Also the size of a sailboat is more than a car – and so the rear moves at a slightly different rate than the front. Most novice sailors oversteer because they think they are in a car.

    To further make sailing counter intuitive when we view the distance over the water the impression we get is deceptive, things can seem too far or too close and it doesn’t match the ‘reality’ that you have learned on land (or the reality if you measured it). Water changes things. Now this is very important when you see another vessel coming at a trajectory towards – if you go on what you ‘see’ you may misjudge and get hit.

    Furthermore (hey, life is complex) it is not simply a question of your speed over ground versus the other boats speed over ground (which if they have a power boat or if they are an ocean line will be vastly different than yours) – water current and wind speed also impact the rate of movement. Thus there are a whole new set of rules you have to learn – and a bunch of instincts you have to unlearn to make the right kind of judgment call to avoid a crash at sea. Fortunately much of the time the ocean is big enough to permit mistakes –but even seasoned pros make them.

    In another example of instinct and perception – sailboats ‘heel over’ a lot, that is they tip, they are designed to do this. In fact a professional boat will often sail with the guard rail in the water – almost at a 90 degree angle. The first few thousand times you do this your vestibular system freaks out and says you are tipping over and going to fall – you get rigid and fearful and fight the sensation – which means you can easily get hurt and perhaps even really fall off the boat. But this sharp angle is really perfectly okay – and you will have to suppress the urge to fight the tipping – in the sailing world a 90 degree angle is normal. But it’s a new normal for you.

    Likewise TBI folks will perceive things a certain way – they will rely on instincts that are broken or don’t apply and they will respond accordingly – but not always appropriately. They will however convince themselves COMPLETELY that what they are doing is right and reasonable – and it would be if the conditions were different. If you are standing on the floor of a room and it tilts that might suggest an earthquake, but if you are standing on a boat and it tilts it’s just doing what it is supposed to. TBI folks may not see what they are standing on clearly. They don’t recognize the new normal.

    However my problem with Schultz is this – TBI devastates ones sense of self, ones confidence, self-esteem, etc. The majority of folks around us do not understand TBI, do not understand what we are trying to manage and often offer advice or judgments that are inappropriate and even harmful. For me, part of my healing, an essential part of my healing is to believe in myself, to believe in my capacity to use my intellect, to make decisions and choices and live my life. BUT if I have to be suspect of those choices, yet I can not rely on the ‘truths’ of those around me – how do I know when I am on the boat or in the room? This undermining of myself can make life feel very uncertain – and that is what I am trying to move away from.

    I continue to try and understand how I must change my life, how I must look at my life differently. This isn’t a clear cut thing. There are patterns here – and I see some of them – but my strength in life has been when I listened to my gut – and now I am told to question my gut. Since the people around me may not have the insight I need or may be self serving it is difficult to simply listen to them for any ‘truths’. This is my life – they get to go home every day to the steady and certain world of their lives; I do not. Thus how does the TBI survivor question themselves without losing their faith in themselves. I actually asked Schultz this and he admitted that there was no easy answer.

    Changing ones life does not happen overnight. It is not a business plan that you can draw up. You do not get carbon credits, applause, or a salary increase when you do it. It is hard and frustrating and humbling – and for folks who already feel defensive and guilty humbling is not fun. I have come to this only very lately, and very slowly and tentatively – and at GREAT cost. I believe in neuroplasticity, I believe that I can do incredible things, my heroes are the folks who cross the finish line against the odds. I love stuff like that, I think like that. But I also want sanity, I want peace, I want a life that doesn’t leave me feeling like I am always walking in a minefield. Crap always happens, always will, bad stuff comes even to the most carefully planned and thought out life. I don’t aim to eliminate mistakes – we make mistakes, we misplace papers, we forget things, we get crabby for no reason. But I surely would like to eliminate the disasters that don’t have to be, that could have been prevented or corrected with just a little effort. For me to feel like I have a life means I have to feel like it’s my life – and to have my life means that it has to be workable, that I have to feel not in control of the world or circumstance but in control of my response – at least a majority of the time. That’s not a limitation, rather that allows me to deal with the world so that I don’t have to be limited.

    Fun, joy, work, accomplishment; the pleasure of life is not about whether you have a schedule or whether you are free-wheeling – it is not even about how many hours a week your work or how much money – though having money is certainly a necessity – but it is about the finding a center within, a center that can help right you when you stray far from your ‘mission statement’, a center that lets you accept the trials and tribulations, the losses, the mistakes and failures and not see them as the ‘final answer’. Maybe for all of us, tbi or not, it starts with the mission statement – what do you stand for. And does your life speak to this?

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  2. I hear you about looking at your life differently. I’m doing that a lot, myself, lately.

    I also hear you about wondering how to constantly monitor yourself and question yourself and still maintain an intact sense of self. So much of my own self-image is wrapped up in how well my brain is functioning, and when it misfires — and/or I realize later that it’s been misfiring without my realizing it at the time it’s getting me in trouble — it does take a toll on my self-confidence.

    For me, it’s all about just keeping moving forward. Being constantly open to new ideas and new alternatives, when the ones I’m trying are clearly not working. It’s about doing constant quality control — fueled by the belief that a quality way of life is in fact possible for myself and the ones I love.

    When I keep that belief intact, it staves off despair, which holds depression at bay.

    Bottom line is — I don’t look for problems for the sake of problems. I only look for them for the sake of the solutions. And I make a point of celebrating, when I figure out an actual solution. That’s key for me. I have to have rewards built in, or I just give up.

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