Going easy today

Waiting for a call from folks I’ve been interviewing with, to see if they’re going to offer me a job… and to see if I can accept their offer.

Resting after a very active day yesterday, and an early start today.

Relaxing as I drink my tea and eat my “second breakfast” of fruit and goat cheese and crackers.

Life is good, and all is well. I’m fine. Not perfect, but doing just fine.

A year ago, I was literally unable to relax to this degree. I was constantly keyed up, and I couldn’t imagine why anyone would want to relax. Why would anyone want to forgo the pump, the thrill, the adrenaline rush? Why would anyone want to settle back into their chair and take a load off?

The load was the point of living, I thought.

But since I started exercising, and my system has started to regulate itself out, and I’ve had some significant breakthroughs in the course of my neuropsych rehab, I’m finding myself better and better able to rest. I’m even making a point of relaxing — and I’m enjoying it. Imagine that.

Time was, relaxing and resting was the farthest thing from my mind.

Not anymore.

Now I’m taking my time getting up in the morning. I also take my time getting ready for bed. I stretch and move, morning and night, and I have lost my voracious appetite for junk food and sodas. I feel… calm. This is new for me. New and unfamiliar and a little disorienting. But over time, I’m getting used to it, and it feels pretty good.

I can walk outside on my own again, without needing a specific purpose for being out. I can interact with strangers again, without needing a structured activity to direct my attention. I can do things on my own, without needing someone with me to “translate” the experience. And I am surprisingly calm, despite the upheaval in my work life. I’ve got a healthy detachment that I always scorned in the past.

No more. Now I get it.

Speaking of getting it, I could use a walk. I’ve been working for four hours, now, and it’s time for a break.

To relax.

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4 thoughts on “Going easy today

  1. BB –

    For a while now I have been meaning to post responses to several of your entries; however – good news – I am working full time again ( :) and that does take up a fair amount of the day.

    In previous exchanges we have talked about the idea of recovery – as you may recall I have always been hesitant to use that word but I also resist (as do you) the idea of ‘limitations’ – that is of saying one cannot recover and one must simply learn to accept themselves as they are. Recently I have come to think it is more a question of rebuild than recovery – that one can, with a lot of work, rebuild functions, abilities, behaviors etc. Rebuild acknowledges that there may be differences, that what is now is not what once was or what might have been, that it is not ‘perfect’ or ideal and may have some jagged edges – but what is can be useful, good and functional and may be indeed ‘whole’ in as much as that has any meaning in anything.

    However, having noted that, if you were to ask me what message do I think is most important in brain injury, I would say it is this; one must completely change any ideas that one has about how much time and effort is required to become ‘self’ again (I will address what self may be in a moment). Rebuild time is far far longer than you will ever imagine – because the rebuild process for TBI is unlike any other recovery process. Holding on to preconceived notions of what is the ‘correct’ way or outcome in rebuilding will only hinder you. For one thing in TBI rebuilding is not an endpoint but an ongoing process and one that takes years – not months, not weeks but years of repetitive and oft times frustrating work to accomplish. At the same time the effort required to do what appears so simple, whether it is to say a sentence, plan an event, attend a family party, or pack your luggage is actually tremendous – and that effort is not visible (as it would be when rebuilding physical injury), it cannot be gauged meaningfully (no, neuropsych tests do not do it) and there is little feedback to evaluate progress (which is also very variable for a long time).

    TBI is a catch-22 situation – self awareness and initiation are key components of executive function which is also what is usually damaged – and yet the rebuilding process requires those very elements to make progress. This is not why it’s slow (it’s slow because building cognitive function is a slow process) but it is why it’s so emotionally painful – in our society self-awareness and self control are key elements in how we define maturity, success, mental health etc – but in the context of TBI they do not correlate in that way EVEN THOUGH THE SURVIVOR WILL FEEL THAT WAY. TBI is also singular in the relationship that emotional well being has to the physical well being – while there is always a correlation between mental health and physical health, in TBI these two factors literally walk hand in hand, each impacting the other in a big way. I do think that TBI IS a mental health issue but not in the way we tend to think of mental health – and so it requires a very specialized approach and SHOULD NOT be grouped with behavioral health care or treated in (necessarily) in the same way.

    As a society we are very geared to short-term fixes, immediate solutions, and an answer for everything. In TBI, especially mTBI this viewpoint is limited at best and in fact I believe it does harm. Unfortunately existing services, funding resources, methods, treatments and coverage for TBI is geared with these premises in mind; the short term, the medication fix, and a relatively passive view – if it isn’t back in 6 months, a year at best, its gone, accept and move on. That doesn’t mean I believe all TBI survivors can restore full cognitive function or can eliminate compensatory tools or will be just like they were (no one knows the answer to what can or cannot be recovered for any one individual). I do not believe that everyone can, with enough work, be as they were – (and it’s why I don’t like the word recover) simply because dead brain cells are dead brain cells – we don’t bring them back to life – we can rewire – and in some cases regenerate, but what is gone is gone. And for some folks that will mean certain restrictions – but all too often we place the bar of restrictions too low and we really have no idea of the capacity of the brain. When Taub first introduced constraint induced therapy for stroke victims (restraining a patients good side to force use of their damaged side) it was seen as almost cruel – but in fact it clearly demonstrated the ability to restore comprehensive function to the damaged side. So it’s clear that we don’t know how much we can rebuild but it’s also clear we don’t know the best way to rebuild nor at what point the demand to do so may cause emotional (or other) injury that is could impede progress (or just make things worse).

    It is hard to appreciate the rebuilding process, to see it as healing because it is hard to conceptualize what this translates to in a visible way. Initially things like comas or severe speaking problems or migraines or confusion are obvious measures – but when those things ease, when those things seem to fade we assume that the underlying mechanism is healed too. Only it’s not, or at least not all of it. Our brains are pattern machines and it takes a long time to recreate regular patterns in circuitry that will serve us well – that is be efficient and effective. It is important to address this right from the start because we are recreating patterns from the start – but it may take years for a pattern to establish itself. Our brains are also ‘lazy’ and so we it may choose the path of least resistance which may not always be the path that leads to a renewed sense of self, to wholeness, to maximizing our potential abilities. It is ‘easier’ for those stroke patients to build up their good side to do all the work (even if that means limitations in life) than to force the damaged side to rebuild functionality. Rebuilding is hard hard work – and I will say that a million times. Some of why it is hard is because it is not work that is recognized or acknowledged by society and culture – like the injury itself, rebuilding brain is largely invisible.

    Furthermore, during the rebuilding process one is still often functional, able to do many things – some of which are pretty complex (say drive a car or write a computer program)– but there remain rents in the fabric of thought and cognition that can be crippling, painful, overwhelming. These disconnects are all the more frustrating in their randomness and the degree of impact they may have relative to the issue at hand – a tendency for sound distraction can leave us utterly confused after an important meeting. Thus the survivor can perform work successfully at a cognitively challenging job – and then mess up in simple communication exchanges which ultimately leads to a negative perception of them. If they cannot see the communication failure before it happens it will keep happening and they will struggle – despite all the intellectual gifts they may have.

    TBI survivors are often blind to their own problems and brain injury affectations – and so one must be diligent about developing tools for self awareness and self assessment – and one must turn to others for help in this (and trust those others which is hard to do). Equally however the survivor must understand that some of the difficulty arises from the injury itself – which can impact motivation, initiation, pleasure etc – and so they must remain determined in challenging themselves, in making effort and forming new the types of behavioral patterns so they can create new circuits. Like a physical wound, a brain injury will often heal itself, but unlike a physical wound, that healing may restrict us if not managed – think of a torn muscle or bone that is allowed to heal with a bent – the finger or leg may never be fully functional again as a result.

    One of the major problems in TBI rebuilding is that there are loops of behavior/thought that easily occur that produce stagnation (and lead to depression and help/hopelessness and frequently addictions or other secondary issues). In TBI there are many emotional ‘traps’ one can fall into; circuitous ruminations, self-victimization, despair, shame, apathy which lead to more of the same. These traps come about for two reasons; 1) physiological injury which affects circuits and 2) because one tends to view their worth or value, their ‘goodness’ by external measures such as job titles, material possessions, or even such things as who can do the most with the least amount of sleep or who never loses their cool and is always the most rational person in the room. To address both of these issues it pays to have a good neuropsych – someone who can help you rebuild self assessment mechanisms in a valid and meaningful way – create new circuits and, equally, help you through the sticky wicket of managing societal expectations, especially those that don’t have much meaning such as shame or guilt. While I don’t believe guilt is a good tool for changing ANYONE’s behavior in TBI it is like forcing someone with broken legs to run a marathon – you damage them in the very area that needs to be healed. Using external measures (status, prestige, multi-tasking, being perfect…) for self assessment is invalid and even destructive since the actions which produce those measures are often hard to achieve or hold onto after a TBI. Guilt is a particularly bad tool however because it is not just that TBI damages your ability to function optimally in these area, it also erodes sense of self. The lack of an internalized sense of self increases the reliance on externals for self worth – feeling guilty because you can’t be who you want to be makes it harder to do what you need to do to be who you can – and the cycle goes round and round.

    This erosion of self is one of the particular aspects of TBI that is hard to evaluate. I believe it comes about when your brain experiences sudden cognitive trauma – thus, while TBI may mimic some aspects of aging (and so people will say ‘oh, we all forget now and then) the very suddenness of it makes it more disruptive emotionally and psychologically – as though we are not the masters of our selves anymore but rather somewhat at the mercy of these random misfires (sudden traumatic physical illness that is difficult from which to recover may have a similar disconnect with self). The biological and behavioral aspects of TBI bears a resemblance to mental illness (and they may be related) but that makes it worse because when one loses self-perception one must rely on others to give it – and they are then judged on how their damaged brains are working and often they work poorly in the very areas of human behavior that give us worth – temper, mood, flexibility, memory, social skills, multi-tasking etc. Thus the survivor is seen as incompetent, inadequate, less-than etc. The result is that the TBI survivor comes to believe they are psychologically ill – and they bear the weight of that diagnosis ALONG with the cognitive struggles of the TBI. In time, without an internal mechanism to self-evaluate survivors tend to absorb the views and perceptions of those around them. These views – often negative, often focusing on lack of willpower, effort, assumption of mental imbalance – then shape the individual so that they DO develop mental illnesses in response. This negative feedback loop becomes the only mirror into self and drives (or at least influences) the process of rebuilding and creates more self doubt and hesitancy. Without a sense of self, it is hard for the survivor to take risk and relearn and so they circle around in despair, lost in a world of neurochemical chaos.

    It may seem that the simple answer is to avoid this emotional morass by not heeding the views of others but equally the survivor NEEDS external input – without external guidance they tend to repeat the same mistakes over and over. Damned if you do and damned if you don’t.

    It is hard to imagine that one is not ‘being oneself’, that one can feel not whole or altered, not acting with intention. Self is a critical part of rebuilding and little is done to address this in mTBI. Prigatano has written a lot about self and TBI though his focus has been on more severe TBI and damage to the portions of the brain that are associated with self awareness. Less has been done with the phenomena of helping mTBI folks find a sense of self and being self-aware, learning from the feedback in their environment. Here is the Wikipedia definition of self – which is suitable enough: ‘The self refers to the either cognitive and affective representation of one’s identity or the subject of experience. The earliest formulation of the self in modern psychology comes from the distinction between the self as I, the subjective knower, and the self as Me, the object that is known. Current views of the self in psychology position the self as playing an integral part in human motivation, cognition, affect, and social identity. Self following from John Locke has been seen as a product of episodic memory but research upon those with amnesia find they have a coherent sense of self based upon preserved conceptual autobiographical knowledge. It may be the case that we can now usefully attempt to ground experience of self in a neural process with cognitive consequences, which will give us insight into the elements of which the complex multiply situated selves of modern identity are composed.’ The TBI survivor may have some of those situated selves intact but others may have been altered – and so they lose a sense of wholeness or integration.

    Given the above its surprising that more effort hasn’t been made to understand self and mTBI. More than intellect the need for an integrated sense of self is elemental in rebuilding a life.

    Cognitive and emotional development are the yin and the yang of self – and one’s behavior and ability (and sense of self) are informed by both of these facets. The reactions, feedback, and support of others can give us courage, faith and hope or they can confine us and make us dependent and helpless. Yet it is also true that others should not blindly support us – views and insights are also needed that keep us grounded and aware – especially because those skills are frequently broken or skewed. No TBI survivor seeks false promises from others (or at least they shouldn’t, they need to know how they present, they need to see their negative patterns, their circuitous thoughts) – but they also need to know that they are seen as valued, important, contributory, productive and that others have faith in this capacity. This balance between hope and reality is the fine line that must be walked – and walked over a long period of time. Again, family, friends etc are usually inadequate to the task of doing this consistently (both in providing support and in providing the ‘how’) – thus a good neuropsych can be invaluable.

    It think it is important to recognize too that TBI survivors are not necessarily all saints or good guys or victims – sometimes, many times they had psychological issues prior to their injuries. I once heard a reputable psychiatrist say the there are three categories of mental health – those who are truly healthy, those who have a range of psychological issues but are functional to a large degree and those who are significantly incapacitated. The majority of folks fit that middle category and their issues range from excessive worry, mild despair to anger management and compulsive behaviors – but they are still relatively healthy. So it is with TBI survivors – they come to the party with issues and their TBIs will make those issues more predominant (and add to them) because they often lose the mechanisms that allow them to self manage. We all have family, work, self-esteem and other problems – TBI just makes them bubble to the surface. Sometimes TBI survivors are not nice people, sometimes they already had anger issues or attentional issues – and these spots were further broken.

    Sometimes they hate their parents or suffer from feelings of inadequacy that existed long before their injury – and sometimes their injury and those issues are so intertwined that it’s chicken and egg. In the end it doesn’t matter – and to some extent the survivor needs to let go of the need to know this and focus on what they need to address. TBI survivors also become very self-focused and so it is easy for them to get caught in the web of their self-understanding. Sometimes you just have to leave it alone, take an action and move on. That’s why volunteer work is a good thing, it allows the survivor to think of others. But regardless it does not behoove the individual to categorize everything as mental health but it also doesn’t benefit to ignore mental health. Anger can be part of the injury AND part of life experiences and unresolved conflict – and both aspects need to be addressed. In the end neither TBI or mental illness should be shameful situations.

    The validation and correction process for the TBI survivor does not produce change on a daily or weekly basis but rather it takes place over long stretches of time – often years. That too makes the rebuilding hard – since others cannot see the multitude of small changes that go into rebuilding they tend to peg the survivor in a certain way and then all behavior is viewed through that filter forevermore. It can be difficult to explain for example how one can arrive at a moment, after several years, when they can again organize and plan in their head. Such a moment does not come instantly – rather it takes many small infinitesimal steps forward (and quite a few backward) that allowed the fog to slowly clear, that allowed ones brain to begin the skill of juggling thoughts and internal pictures so that eventually one can picture where things should go as a whole, and move through the sequential steps without problem. This seems like a minor thing – the survivor can be capable of explaining quantum physics yet not be able to arrange items in their household.

    Understanding quantum physics is nice but the inability to sort and arrange a group of items will trip you up over and over in your daily life. We group, arrange, put order in many areas of our life – and we do so without making it a big deal. When you can’t do this you may find that you avoid the activity and soon find yourself in a jumble of stuff – both in terms of your living conditions and your thoughts. This creates more chaos and the TBI survivor becomes more confused. Should others intervene? Or should they let them founder? And, during all the time that the person is slowly rebuilding those sub-skills they are perceived a certain way which may impede their ability to make real changes.

    These levels of recovery occur in many areas – such as social skills that allow one to manage temper or attitude, or the ability to tolerate loud or busy environments without feeling out of control, or being able to talk and do something at the same time. There are so many many actions which were really a challenge for the survivor yet looking at the person no one would imagine that to be so. Survivors are very defensive, often trying hard to prove their capacity and so they will deny even to themselves the issues they face, they avoid conflict, ignore problems and let things go – and then feel inadequate or less than because they know that such stuff is ‘simple’, a part of everyday life yet it seems to be beyond them.

    This too is part of the problem with TBI – if a person has difficulty interacting with groups – they are verbally aggressive, speak out of term, monopolize conversations – is it because a) they have damage to impulse control or some other portion of their brain, b) they are defensive about having a TBI having been treated as defective by family and so they overcompensate, c) have been isolated by their injury and recovery process and are desperate for human connection and are out of practice, or d) have some other non-TBI underlying organic or emotional pre-morbid condition? Some research says that one key element in identifying this is whether the person can recognize that they have this problem and if they seek to address it through experience and learning. Regardless, these very problems are some of the most difficult culturally and socially to manage – and they impact work, relationships etc.

    As I said, abilities do not return as whole functions but rather in small small recoveries, at a level that is often not even apparent to the survivor though they may feel sense that they are more ‘themself’ but they cannot say what minor skill had been reformed – it may be the capacity to hold a visual image in one’s head, to discern a single voice in the a room of noise, being able to ‘see’ in the minds eye, to hold a number in working memory – any one of a zillion unidentifiable skills. Certainly if the survivor can barely recognize the return then others will not see it either – and so from their perspective the survivor is not trying or is permanently damaged goods. Others may feel it more expedient for them to do it themselves (and thus incapacitate and undermine the survivor) or they get mad at the lack of effort or they dismiss the person as irreparably broken. And all and none of the above can be true. These interactions can occur with caregivers, family members, employers and even the most well-meaning friends.

    The effort of relearning skills is very difficult – I cannot overstate that. What is involved in the simplest seeming function can be a complex array of learning, memory, attention, environmental filtering, organizational skills, internal visualization, initiation, identification of an endpoint (completion), self-regulation, and feedback into progress. One may be weak in hearing but strong in seeing, one may be good at starting and not so good at finishing, one may have a hard time starting and a hard time stopping once they get going. Each of these issues in turn creates an potentially negative emotional facet – anxiety, defensiveness, anger, frustration as one tries to cope with these issues.

    One of the problems with the current models of rehab is that they focus on the gross skills – and more and more research is suggesting two key factors: 1) that these subset skills are key in forming the bigger skill sets – so that for example mental focus may be about sound differentiation and learning how to pick out a sound may improve focus and 2) that the brain is systemic, improving one area will improve others since there is overlap and relationships. So improving balance may reduce fatigue. These subtle skill sets are what make up those invisible changes and are what existing evals do not always show. Currently rehab training is gross skill oriented – often making the tasks seem overwhelming – perhaps there is a need for more sub-skill focus?

    As you know consistency is also not the name of the game – days or weeks may go by with things going smoothly and then a high pressure situation undoes a lot of good work or at least it feels that way. That too is hard; you work at something and then make the SAME damn mistake again, have the same problem – be it anger or not listening carefully or losing focus or whatever. And you wonder ‘will it ever get better or am I stuck with this?’ And who would have compassion for the effort I put into trying – in a society where compassion and effort don’t amount to much. Do you attempt to explain, try to reassure others that you aren’t ‘really’ like that or let it go and just move on?

    Emotional issues of any kind can also, instantly, take the train off the track – and so one may have to make choices – working at a new job may mean that you have to avoid serious interpersonal discussions with your wife for a while because you cannot afford to carry those concerns and the challenges of work. But your wife is feeling a need to have a discussion about you NOW and its hard to explain that you can’t. The survivor often has trouble segregating emotions and cognitive tasks successfully. Thus emotional pressures may make them appear scattered, fragmented and disorganized. This can even be when something as small as having lunch with the boss – being so sensitive to the boss’es opinion the survivor gets doofy and rambles. While many folks who are experiencing personal issues or are in stressful situations may find themselves off their stride, the TBI survivor goes beyond that – their cognitive functions and physical functions and emotional functions all overlap – and so the price they pay may be higher and faster than for others. Perhaps this is because there is a reduction in bandwidth and parts of the brain do double duty – but who knows.

    Everyone does have struggles cognitively, emotionally, physically – but the TBI survivor is more vulnerable and trained to focus more on themselves (with so many people pointing out your differences, all these tests and all this discussion one cannot help but become self-focused – which is why I recommend volunteering as a way to break out of your own head). On one hand the survivor expects so much of themselves – they ignore the fact that most folks blow up now and then, that others are forgetful or screw up etc. But equally they may ignore some of their weaknesses, feel defensive and over compensate to prove their worth. Balance – its always a search for the sense of balance that once came without any effort, without any thought. Loss of balance in TBI is a metaphor for life after a TBI.

    The impact of these changes comes back to one of my favorite topics – the psychological versus the physical. I believe that these are so intertwined that to parse them out is well nigh impossible and may not be helpful and may even be damaging. How I wish we could as a society drop our fear and dislike of mental illness – but we can’t. Yet we respond to our environment, we respond to how people treat us, how we interact to the world – and those responses become our mental status. So if people treat us as damaged we react to that in some psychological way – and if we struggle with who we are and loss of self or sensory integration it will alter our emotional landscape, it will influence our brain circuitry.

    Some folks have, by nature, short tempers or a proclivity for depression or attentional issues – and in some cultures or during some phase of evolution those traits may have been more useful. In prehistoric times a powerful temper might have been the only rule of law that existed – and now you inherit the genetic predisposition for it. Pre-TBI it could be mitigated, post TBI it is far more unwieldy a beast. In today’s world the demands for multi-tasking, focus, physical passivity (the ability to sit for a long period of time), less sleep, high energy, emotional control, sequencing and logic, mental conceptualizations etc – are predominant. And when someone does not have those skills to the degree we ‘expect’ they are labeled defective, inadequate, disabled – and frequently given drugs to bring them towards the norm. Yet oddly we don’t really know the degree of benefit of some of those abilities – for example the notion that we can multi-task so very well is being questioned vis-a-vis cell phone usage and driving, Culture doesn’t always prescribe things that are good for the species.

    I do not advocate that there is no such thing as mental illness or that one should simply allow people with serious mental health issues to do as they like, to wander about etc. I believe that mental illness is a serious issue and is indeed an illness – I just don’t think everything we say is a mental illness really is. I also think that while the etiology of brain injury behaviors and other mental illnesses are different that they share some similarities – however, again, parsing them apart is impossible. Emotion is part of thought, necessary and vital to life. Often in brain injury, emotional behaviors that might have been small issues but manageable prior to Injury become exacerbated and problematic afterward – perhaps because the feedback mechanism for self-assessment is so easily damaged. In the end it is all electrical impulses and neurochemicals – and so is that physical or psychological and does it matter?

    One of the dangers of seeing mTBI folks as ‘handicapped or damaged’ is that we do not support the ability to rebuild lives, to recreate lives that are meaningful, productive, happy or successful. We limit based on preconceived notions and we define success in the short term not the long term. As I said however this rebuilding is hard, hard work. Think of how much effort goes into building your brain as a child; to rebuild your brain, even (and perhaps especially) part or parts of it, as an adult is even more complex – and exhausting, frustrating, awkward, and filled with mistakes and ‘failures’ etc. (just like when you are a child except that as an adult you are expected to not make those mistakes). BUT – and this is a big but – an injured brain is injured, it IS altered and depending on the injury, the location, the age, etc. not everything can necessarily be rebuilt to the degree or complexity of before or even just ‘as before’ (and in your case with multiple injuries throughout your life there isn’t really a ‘before’). As the rebuilding process occurs the needs of the survivor change – but without a way to evaluate those changes it is hard to know how to meet those needs. And that too is why the rehab programs are not very successful.

    For the survivor there is the constant judging of ‘where I am currently at’ – which is not unsimilar to the angst and frustration teenagers experience when they begin to realize their potentials, strengths and weaknesses and compare themselves to others – wanting both to fit in to society but also to be uniquely themselves.

    It is easy to say that it is up to each individual to decide how much they wish to push themselves – but if your capacity for self-judgment is damaged that influences how you approach your rebuilding. The people around the survivor all are invested in certain outcomes for their own purposes – and cannot always be good guides.

    The way to rebuild is just like the answer to ‘how do I get to Carnegie Hall?’ – Practice, practice, practice. Taking on challenges, reaching for the bar that is just out of reach without berating yourself every time you fail to touch it, doing mundane and boring things over and over and over (think of the Karate Kid and wash on/wash off), putting yourself in situations that do not feel totally at ease, learning to recognize your emotional cues and responses and to manage them, redirecting your thoughts, letting go of ruminations, letting go of the need to know the answers, to find the derivative and rather instead to just do. And forgiving yourself, even and especially when the world around you does not. Admitting failure, admitting fault – and then letting go and moving on. Looking at the big picture.

    TBI makes one acutely aware of thought and emotion – and like the apple in the garden of Eden the knowledge of thought and emotion can be a frightening thing – just as cancer patients recognize the frailty of life TBI survivors recognize both the complexity and the delicacy of thinking; what a gift it is, and what a miracle it is. And how hard it is.

    Brain injury is a difficult challenge – both in how to address the issues and in how to manage the process of rebuilding. Society still stuggles with accepting any notion of TBI recovery – tell the world you had cancer and people think of your pain, tell the world you had a stroke and they think of paralysis, tell the world you had a brain injury and they think – mentally defective. Only serious psychological illness comes close to this negative connotation.

    Often you have asked for the plan, the tools of what needs to be done to ‘recover’ – but I believe that we still do not know enough, we are barely in the infancy stage of understanding our brains. I also believe that most, programs for recovery are based on invalid models of brain function, and have roots in the traditional short term approaches used for severe TBI. They are also deeply intertwined into our prejudices about BOTH mental illness and brain injury. Nor are we in the medical world used to thinking about human beings as systems, that the physical and the emotional and the mental are all of one, that they influence each other. Thus our vocational rehab, our cog rehab programs, etc. are all fragmented, geared to the lowest common denominator and way underestimate what one can achieve.

    Yet much of the answer is horribly banal – exercise, sleep , good eating habits, training for a positive mental attitude, balancing work and down time, meditative activities, thinking of others, finding productive work, self-discipline – sometimes with the help of therapists of various sorts – be they neuropsychs or psychologists. Interacting with a rich and complex environment will help your brain develop – even though it may be a struggle to do so.

    There are other ‘tools’ too. While vocational resources, physical therapists, occupation and speech therapists (sometimes referred to as cognitive therapists) CAN help I believe those programs need more rigor and intensity, especially for mTBI. There are many things one can do for oneself – rebuilding sensory experiences, training our memories, working on balance, eye-hand coordination. One can do this in innumerable ways – taking dance classes, bike riding, putting together Ikea furniture, playing cards or board games, volunteering, swimming, doing puzzles, reading, learning a new language, setting goals, taking classes, writing papers, singing, learning poetry, working a cash register, cooking meals, teaching others – and on and on. I have passed through TBI survivor blogs where people talk about how they don’t want to take a hourly wage job because it feels too overwhelming – I get it, yes, it can feel awful – but if they don’t do it it will always feel awful to do these things and they will remain as they are – aware of their limitations and helpless. TBI is not a crutch, not an excuse for lack of effort or trying or participating. But it is not a finale, not a label either.

    We have to do those things when we don’t want to, when it feels like an effort – and we have to learn not to judge ourselves when we fail, make mistakes screw up or whatever you want to call it because – just as we would not want to judge a child we are, in the words of Michaelangelo ‘Ancora Imparo’ – still learning.

    As a final thought – I apologize for the prolix nature of this missive – is it TBI? Need to connect? Not enough time to edit? Emotional angst? Or just me?

    And does it matter?

  2. m -

    Welcome back. Glad to hear you’re working full-time again. And I’m really glad you checked in. Long comment, but I needed a good think this morning.

    I’ve got tons of feedback on what you wrote — but my time is short, so it will have to wait till later.

    Congrats again on the job.

    Cheers
    BB

  3. Pingback: Bad decisions make good stories « Broken Brain – Brilliant Mind

  4. Pingback: The unbearable fullness of being « Broken Brain – Brilliant Mind

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