TBI SoS – Your life is a whole rehearsal…

… for the moment you are in now.

Thus spake dictionary.com, when I wandered over to look up a word. True, true, true.

And if all my life leading up to this moment is a rehearsal for this moment, then this moment is also a rehearsal for what’s coming later.  You can improve your brain matter at any age. You can prepare for any eventuality. I’m convinced of it. Of course, your preparation may not be adequate, or you may be preparing yourself to fail, by setting your sights on things far beyond your scope of ability — like taking up downhill race skiing at the age of 92, when osteoporosis and arthritis have set in. Discretion is the better part of valor, so why set yourself up?

I’m feeling a little like I left the TBI SoS series a bit abruptly. Things got busy. I flew across the country. I had other things I wanted to talk about. Distractability can be a real bitch, sometimes.  Anyway, the magical three steps I’ve identified for restoring my own sense of self are:

1. Understanding the nature of Self as an expression of an individual’s unique personal abilities.

2. The overt, conscious valuation of those abilities both by the individual and those around them.

3. The repeated practice of progressive abilities, all of which lead to further growth and improvements and expand the sense of Self beyond the limits it once had (even beyond the limits it sensed prior to the injury).

Which is to say, this thing we call our Self is specific and unique to us. It’s the part that’s unlike any others, but which makes it possible for us to connect with others. Those differences are not deficits. Not if we value them. And the overt, conscious, deliberate valuation of our differences, our abilities, is what helps us to get back to a place where we feel like ourselves again.

Indeed, if you consider that differences are what make us individuals, then the changes that take place in us after TBI aren’t necessarily deficits. Of course, if we look at them as losses (which to some extent they are) and get stuck in that loss, and we continue to try to get back what may be gone or changed for good, then we lose the chance to seek out new ways to be unique and individual.

One of the BIG problems I have with TBI rehab — based on reports from survivors as well as videos I’ve watched on YouTube — is the focus on accepting your deficits and resigning yourself to a life that is less than 100%. Less than 100% of what, exactly? How we were before? What we were before? That may be an accurate assessment, if you use your old life as a measure of your future prospects, but the minute we start doing that — basing our current value and self-assessments on an old, outworn mesaure — we hobble ourselves and our future.

Who among us ever remains the same throughout the duration of their life? Not a one. Who among us never changes, due to circumstances? Only someone who is stunted by fear or some sort of imbalance. Normal people change. We change all the time. After job changes. After life changes. After marriage, divorce, death, birth, and all those other life passages that we as humans participate in. Our bodies change over time. Our personalities change, as well. But all along, we remain who we are. And so long as we feel comfortable and fluid in our self-expression, we can be reasonably sure of who we are in the world.

It’s the dramatic life changes that turn us upside-down. Natural disasters that destroy our homes. War and pestilence that decimates our families. Sudden divorce. Unexpected deaths. TBI. All of these — and more — do their part to warp our sense of Self and make us strangers in our own skin.

See, here’s the thing (for me, at least). The tragedy of loss of Self is not so much about losing specific abilities or capabilities. It’s not about losing your balance or your hearing or your cool. The real loss comes from losing the sense of fluidity, the sense of mastery, your sense of beign a viable individual. It’s the loss of ease and grace that hammers us, not the loss of specific abilities. I would even suggest that even in the face of a substantial loss, if we have backup abilities that can come online to help us immediately — say, we become intensely sensitive to light and sound, but we soon learn to use sunglasses and noise-canceling earphones to protect our senses… or we suddenly have a piss-poor memory, but we’ve got a PDA that we constantly use and we’re already used to writing things down — that can soften the blow and keep us from disintegrating into a pile of quivering self-doubt.

It’s not the loss of specific ability that gets us. It’s the loss of confidence, and the loss of our sense that We are Alright, because we can handle whatever comes along, that does the damage.

And given that, if it’s the loss of the feel of grace and ease and mastery which undercuts our sense of who and what we are and defines our individuality, then hell yes, we can restore a sense of Self over time. Our renewed sense of Self comes from repeated actions, practiced actions, the over and over and over again that goes along with things we seek to do well.

These don’t even need to be big things. I can tell you in no uncertain terms, I have gained some of  my greatest wins and restored a considerable amount of confidence from seemingly stupid little steps that I mastered. Things like daily exercise. Things like being able to get through making my breakfast without melting down and messing up the kitchen. Things like being able to relax.

In my practice and mastery of those things, I found a solid footing I had lost in the aftermaths of my TBIs. Not just the most recent one in 2004, but all the others I’ve had, each of which took something from me that was a core value about myself. The cumulative effects have not been easy to to deal with. Far from it. But through the simplest of actions — making lists about what I needed to do each morning and following them until I had my routine down pat — I found my footing. Solid footing. And that set the stage for a level of comfort I had all but given up on.

And these small steps, these small ways I was able to restore my sense of mastery, also restored my sense of Self. Because in the midst of all the confusion and frustration and trial and error of my daily life, I was able to make good, solid starts to my days which set the stage with confidence and surety. Before I had my morning routine down pat, I started out every day steeped in the most caustic acid bath of self-doubt and insecurity. Before I figured out how to get my breakfast made without blowing up, I couldn’t get out the door and get on with my day in a sane frame of mind. But once I had the basics mastered, it set me up in a very good way for future success and future confidence. And even when everything at work was looking confusing and frustrating and not very promising, being able to go back to the basics and practice them with mastery, retracing my morning routine at night, and ending each day on a stable note, did wonders for my ability to cope and just get on with it.

No matter how small our actions, no matter how insignificant our new masteries may be, the fact that they are masteries, is what gives them potency. It’s what gives them power. They can be the “littlest things” — being able to brush our teeth, take a shower, and wash our hair every morning, being able to make breakfast in such a way that the coffee isn’t cold by the time the egg and toast are ready to eat. Or they can be more complex things — being able to control our emotions when confronted by the unexpected, to read a book or participate in a conversation, or to go on an extended business trip and participate fully in the experience without melting down. The main thing is how we participate and experience them. The main thing is not what we do, but how we feel.

That feeling of mastery, even if it’s related to a new activity or an old activity we’ve changed, is what restores us. And if we focus on that, rather than the specifics of what we’re doing and our judgments about them, we have a chance to increase the value of those things, and come to accept ourselves and our newfound ways more than ever.

Take, for example, someone who’s been hurt in an accident, and is unable to walk without braces and canes. I once knew someone like that — they’d fallen 100 floors in an elevator, and lived to tell the story. They could have given up and given in, but they turned their attention to other activities — ones that weren’t dependent on their legs to get by. They went from being an elevator inspector to being a stock market investor, and in the process they ended up much better off, financially, than they’d ever been before. Even with the stock market crash of 1987, they only lost a fraction of their holdings, because they were smart and didn’t get greedy. They couldn’t walk without canes, but they could drive a modified sportscar and they could certainly participate on other levels. I doubt they would have said falling 100 storeys in an elevator was the best thing that ever happened to them, but they made it work. They made their life work.

So, no matter how different we may end up, after TBI, there is always more about ourselves that we can discover. We can certainly stay stuck in our past, interpreting our every mistake as an indication that something is wrong with us, and we’re too damaged to get on with it. But the simple fact is, our brains are plastic. Our lives are plastic. We can shape and change them however we like – within reason, of course. Not a single one of us knows just how much we are capable of. And until we stop clinging to the past and decide to move on to the future, we cannot find out.

We’re all — TBI or otherwise — like shards of a broken vessel, that needs to be put back together again. Tikkun Olam is one way of saying it, I think. Repairing a broken world. Repairing our broken Selves. Restoring our whole Selves — and others — in the face of shattering circumstances, so that the light we all hold within ourselves can shine forth. When we see the light, instead of the broken pieces, and we find new ways to experience and express that light, how much more can we be, than just survivors of some terrible accident or fate?

Ultimately, all of this TBI SoS series is just a very long way of saying:

  • Our Selves are the collection of unique qualities we express with ease and grace.
  • Our sense of Self depends not only on our uniqueness, but on a sense of mastery and fluidity that comes with practice of those qualities.
  • When that sense of mastery is disrupted, our sense of Self is, too. We get lost. We lose ourselves in the newness of our reshaped brains.
  • Nevertheless, we can restore our Sense of Self by achieving mastery. These can be in small ways, or in large. But they should matter. They should have value for us and for others.
  • By practicing our mastery, day in and day out, we can build a foundation for our sense of Self that restores our own confidence on small but important scales, which then set the stage for later, more complex masteries.
  • Ultimately, we can find our way back to our Selves by expanding our definition of who we are and what we’re capable of doing. And we may just find that the new Self we inhabit has abilities and talents we never would have discovered, had we not been forced to.

All of us change over time, without exception. Welcoming the changes in our Selves and letting our Selves be made new again isn’t something to be feared. It’s something to be encouraged and valued. Fearing changes helps no one. Fearing differences just makes matters worse — for ourselves and others.

And in the end, it’s not so much what life sends our way, that determines our future and our comfort level with who we are, but what we do with those well-camouflaged gifts.

This is the eighth part in a multi-part exploration of sense of self and how it’s affected by traumatic brain injury. Read the other sections here.

Note: I am currently writing a full-length work on Restoring a Sense Of Self after TBI, and I am posting the sections here as I write them (click here to go there now).

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.

3 thoughts on “TBI SoS – Your life is a whole rehearsal…”

  1. BB –
    I cannot help but smile at your chutzpah (said in the nicest of ways) in trying to answer the question of what is self. You walk in the footsteps of Descartes, Williams, Woolf, Churchland, every major religion and a few gaxzillion neuroscientists – among others. But okay – all the power to you !!

    I find much of what you say insightful and I deeply appreciate the depth and thoughtfulness of your exploration of self. I also agree that the role of self in recovery is not truly understood or managed well.

    A few additional perspectives on this topic -.

    1. Self as an expression of an individuals unique personal abilities…. Self ,for most folks, is a constantly evolving notion that actually changes for everyone throughout life – but generally the capacity of defining self or having a sense of self is culturally and socially in synch with life station… Ask a small child what is self and they don’t get it (self is concrete – little boy or associated with family ‘I am a Smith’, ask a teenager and they will identify with an ideal or a concept (I am a goth or radical or a geek) ask a few years later and the person points to their title, their position, their car. In TBI self is disrupted, altered and with that alteration are the abilities that a person has. As the person heals some abilities return, others are may be lost and some others still reformatted – but still they exist and so self exists – in some fashion.

    When you cannot do or act in ways that you are used to, when what we do ‘without a thought’ becomes a challenge then suddenly we are struggling with self. The struggle comes I believe, in large part because we seek a static sense of self . Once a person has a disruption in self it become destabilizing, self provides certainty. So most rehab programs etc encourage letting go of old self, and accepting this ‘new self’ – as though they are interchangeable outfits that we can put on. However this is absurd because old self is still there, present and accounted for – at least in some part and ‘new self’ is no where to be found and won’t be for a while. I am not about to abandon what has formed for years because I cannot. But at the same time it is skewed, off center and I am rebuilding brain so I cannot quite be fully a ‘new’ self. So what I would suggest as part of the healing process is that survivors redirect their idea of self and embracing the ambiguity of self, even accepting a ‘selflessness’ as a normal and reasonable state.

    This is not the same thing as mourning the loss of self but rather it means that one recognizes that self is changing and time bound – that is that our sense of self will shift and morph over time. Furthermore, while self goes through these processes after tbi it is okay to make mistakes and fail etc because that is the process of ‘self discovery’. Many individuals after brain injury or even after other traumas and difficulties – discover new aspects of self, capacities that they did not know they have. These previously unrevealed aspects of self may become part of ones reformed identity in a big way. Yet it may take a long long time for them to be cohesive and unified enough to be what a person thinks of as self – and where someone feels good about that.

    Many folks after TBI feel frustration because they seem to have lost abilities, because they have changed abilities – and they seek to recover what is lost as the only path to self. It can be a legitimate approach, absolutely – but it is not the only path and the restoration of abilities or functioning may not occur for a long long long time. In the meantime self is still there, but not in the way we are used to having self.

    2. The overt, conscious valuation of those abilities by the individual and by those around them. Many TBI survivors constantly undergo major change – especially in the first few years or so right after a TBI. The interpretation of their behavior by others and the valuation of them as individuals is often skewed by the overt characteristics of a brain healing and reforming itself. I started a relationship shortly after my accident – in many ways we were well paired but the relationship ended because of aspects of my tbi that the other person could not deal with – but which they saw as ‘me’ (even though I did not since they were relatively new – and ultimately transient – aspects of me). That person had no sense of me before and no sense of whether those aspects would change or stay so I understand. But I often felt frustrated – while I am sure that it was the right outcome regardless I do say that I would have at least preferred being rejected for who I REALLY was and not who I was at the time.
    However my own ability to evaluate myself has been a struggle as well. In TBI there are two kinds of self awareness issues; some folks have a very injury related problem that damages the capacity for self awareness (these are the folks that Prigitano wrote about) but many others have a different kind of self assessment struggle – one that is less discussed and less understood because it cannot be related to the damage of a single brain function. It is demonstrated by the expression of the injury (after a certain amount of healing/recovery/time has occurred ) which is subtle and intermittent and unexpected even to the survivor. One can move along on a smooth road and then suddenly make a gaffe, come up against a wall, make a huge blunder etc. Or one can give more weight to a simple mistake or over react to a perceived response than is necessary. Sometimes that is the injury (a tendency to see things in an absolute fashion) and sometimes it is the psychological response to such a personal injury as brain injury that leads survivors to try to prove themselves harder than most folks. The problem for the survivor is that they often don’t see their own issues – either minimizing them or over-reacting to them, sometimes seeing things as due to ‘others’ or themselves as victims – but they don’t recognize that they are simply experiencing life and the process of self development – and thus a valuation of themselves is best put off for a while. Again, think of teenagers – how many mistakes or personalities they go through – often we look at a teen and know how much mis-perception they have about themselves – but they must go through the process to get to that understanding. Another weakness of rehab – teaching people how to accurately self-assess and self evaluate.

    3. The practice of progressive abilities….I agree very much that self is a matter of practice (my good friend Aristotle – we are what we do)– and this may be why children don’t have a ‘self’ like adults – they haven’t had enough practice in the world to establish one, to draw inferences and select values, behaviors etc, they imitate parents and family or community and identify themselves through them. Teens on the other hand have begun to have some level of choice and experience and struggle to NOT totallyidentify with parents and family and the comfortable community – perhaps there is some biological mechanism that kicks in that forces them to have ‘self’ identification outside of the larger unit. They try on selves – through the use of costumes, behaviors, styles etc. Their selves are fluid which they find frustrating to some extent because they want to BE something. But society allows them the grace of ‘no self’. Many adult mTBI folks are not given that grace, they are not permitted a fluidity of self and so the lack of a realized self or a disrupted self creates a psycho-pathological reaction. The pressure to provide support for a family, to be a good citizen, to fit in, is even greater for the adult than for the teen – and there is not much support for trying on selves, for experimentation – even if that is what is needed.

    The self that a survivor recreates, and the degree of recovery will be – in part – dependent on the environment AND it will – in a bit of iirony – also be dependent on self. What I mean is that the extent, location of injury, as well as pre-morbid functioning will play out in how the person moves forward as well. There are many folks who may have more neuronal capacity for drive or achievement (perhaps due to emotional factors) that may influence how they address their issues. The rehab industry does tend to encourage passivity which is a negative.

    Self is also formed by unique combination of the functional components of our brain – both nature and nurture formed; whether we are visually oriented, co-ordinated, have good memories, believe in knowledge, are self driven and or self disciplined. Some of those component remain after an injury to some degree – and some parts are damaged. The parts that carry forward help form the foundations but the rest comes from the people and experiences around us, from the results of what happens. It’s the mix of our genetic pre-disposition, our previous constructs of self and then our experiences post injury that combine to reform into a post injury sense of self – which may at times resemble deeply our old self but may also at times feel completely different – but equally satisfying. Indeed we may find that the changes in attitude and approach we develop on the way make us feel stronger about ourselves.

    Self is a kind of catch-22 thing – self informs the outcomes and experience and experience and outcomes feed into the sense of self.

    I discourage folks from thinking about ‘exceeding’ where they were because not everyone can do that – if you were an accountant and you have truly lost the ability to be facile with numbers then being an accountant will not bring happiness, sense of self, security, peace or quality of life. This isn’t to say that some folks cannot return to the functionality that they had before and even use the knowledge and skills they have learned in their rebuilding process to have improved lives – yes they can – but that’s not the only answer. Sometimes it is smarter, healthier and more successful to rethink things – or perhaps this is an opportunity to change, to pursue other dreams or ideas or hopes or selves.

    I am not saying that self doesn’t matter – it DOES matter, it is culturally significant but the idea that we must have a clear, well defined self AT ALL POINTS IN TIME can be a set-back. Self matters because society tells us (and we tell ourselves) that self matters – and because our brains (and I have said this many times) are pattern making machines – the more established and reliable the pattern the more we have a sense of self. When the pattern fails in any kind of significant way our sense of self is impacted. Self is essentially the predictive portion of our brains judging what we will do, how we will interpret, etc. Our brain includes many variables in the prediction formula – including emotions – and so when our predictions off – and I mean instantaneous and immediate predictions that guide us in our day to day moment to moment lives – we struggle and feel that we are not ‘our selves’.

    4. You might be amused to know that William James (who can be very difficult to read through) actually concurs with your own view of self – He says ‘self is the sum total of all that a person can call his, not only his psychic powers but his clothes, his house, his spouse and children, his ancestors, his friends, his reputation and works, his lands and horse and yacht and bank account. If they wax and prosper then he feels triumphant, if they dwindle and die he feels cast down.

    Or in a more Zen perspective…

    If you think your body and mind are two that is wrong; if you think that they are one, that is also wrong. Our body and mind are both two AND one. (Suzuki).

    M

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  2. Thanks m –

    Why not walk in the footsteps of giants? There’s plenty of room 😉

    I really appreciate what you say about not getting hung up on a constant sense of self. It does pose problems, when you expect something as mutable as the self to stay set in one form, in order for you to feel like yourself. For me, it’s as much about the sense of living, as it is the sense of specific qualities we may have. If we orient our selves according the feel of our lives, then it is possible to have the self encompass the phenomenon of no-self. If you’re comfortable with ambiguity and you enjoy being mutable as mutable can be, then having no-self may make you feel even more like yourself.

    It’s all pretty fascinating.

    Thanks again
    BB

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  3. As you know, I appreciate insights into identity. I have been thinking a lot about what you have said here before I actually read most of your comments. But I think of it in a broader sense. As you said, there may be some losses that you can easily compensate for such as by wearing sunglasses. I wish I knew the exact date of a Reader’s Digest article that was about a woman who said that her friends who were starting to have Senior Moments were just catching up with her as she always had a poor memory. I don’t know how much was satire and how much was self-admission. She said she met up with someone who was like an old boyfriend and he mentioned a group that didn’t really seem to register with her. He was astounded as she introduced him to the group. In the midst of her vague and hazy memories, there were some vivid moments of clarity making life interesting. It actually surprised me that someone with such a poor memory would be a writer in her capacity as I think memory is so key. I struggle with wanting to write something and not being sure if that is exactly how it happened. The human mind can play tricks. But I remember a lot and it is a way that I can bless others’ lives by talking with them or writing.

    On the other hand, if I focus on my lack of life skills, I would feel very depressed. If I lived in a culture where a woman who was not domestic was looked down up, I would probably feel very bad about myself. If being single and having no children was negative in culture, then I would also feel badly. I wanted children when I was young. But I have felt with my condition that I would not be a fit parent. I have had mixed feelings about whether it would be wise to marry because of that.

    My home is not an easy place to gain life skills. For instance, they won’t take things off shelves or remove things that make me nervous making it hard for me to do chores or even go in the kitchen. I seldom go in the kitchen. My mom never showed me much in the way of chores. It is kind of like she thinks I would just figure it out. As I have shared, my dad would go in rages. He would go insane and say things like “use a system.” When I lived away from home with others, they reinforced that I don’t do things right. Where learning disabilities may have a role or trauma, I don’t know. Maybe I could be taught with someone with patience. I have lost what little I know and have phobias making it hard to try things. However, I started on an expensive supplement that has anecdotal evidence of helping. However, I don’t know if their ocd is like mine. You see, it is not like I have panic attacks generally. I can touch things that are contaminated. It is if I have to touch another person or contaminate them that I worry. I worry about the other person and doing something does not stop the worry. The worry could come hours later. And it is impossible to track everyone that you can come in contact with to know if they are safe. I hear that you can’t cause another person to have ocd just by sharing your phobias and I hope that is write or otherwise I would not share.

    I need to exercise more. It is also a challenge. However, I plan to order something that is supposed to be good for circulation. 🙂

    You are a great example to me although I may have never had a TBI. I did jump out of a car once on a dare but I blacked out kind of and don’t know if my head hit the pavement. I don’t remember the moment of the fall but my friend said that I rolled but I don’t know if it was in the air or on the ground. I am not sure how fast the car was moving. I went swimming shorlty after the fall and went under water where the pressure was very bad in deep water like I used to do in swimming lessons or for fun. I don’t know if that was bad or good. I did not tell my parents and they were not told for a couple of years. Therefore, I never had any official tests. However, my memorization skills were still in tact. I had discussions to learn. When I returned to the University after a few years, I still recieved mostly A’s. I feel blessed as some of those A’s were during a period that some woudl consider to be a nervous breakdown with ocd. However, I guess that you can’t have a nervous breakdown if you are getting straight A’s in school as I did that semester.

    Well, I will try not to be so wordy in the future. I actually wanted to read this thread when my mind was pretty fresh. It is interesting to me but I have to be fresh to concentrate. Concentration is something I have struggled with through the years but am better now than in years past.

    I read something recently that makes me think that maybe I should have my tonsils out. Wouldn’t that be something if all it took was to have my tonsils out to live a normal life? This was at Psychology Today and related to some type of strep. However, I don’t know if I had ADD and as such do not know if the relationship to ocd would be the same for me.

    I know this is long. I am not even sure if it will post. I always worry that you think that I don’t have friends or something because I write so much here. I actually have lots of friends although I seldom leave home. But they may not all have the interest in Cognitive Learning or Identity. They have other interests that I share. Bye for now. I could probably write more knowing me but I am actually feeling like bringing this to a close.

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