Good video:
Broken Brain – Brilliant Mind
Using the infinite mind to overcome the limits of the brain… Experience-Based Brain Injury (Concussion, TBI, ABI, Stroke) Survival Strategies and Tactics
Good video:
1. I think that the study of ‘self’ in brain injury is not understood or studied in a meaningful way enough. This is one of the most profound aspects of TBI.
2. Initial changes are particularly unsettling as one can sort of sense that one is not the same – even if you cannot articulate why – but you still has a feeling of your old self or at least that there was a diferrent you then there is now – because you don’t think the same way. But it is important to realize that our sense of ‘self’ is born of years of developing thinking patterns, as those patterns get laid down we form ‘self’ – change the pattern, even part of it, and self is disturbed. But during the early stages (1-2 years) of recovery especially the brain is healing and rebuilding patterns – and so some old self comes back and some new self is formed and incorporated – and in time that new self stuff will start to feel like you. I also think that the healing process recapitulates brain development – first there is basic skils –speech and motor skills, memory, then sensory refinement; touch and taste and smell get particularized, as your emotional states can swing easily from euphoria to tears, and anger is easily aroused and when angry one loses the ability to articulate, indeed emotional stressor impair cognition. Then one becomes less overt but still overly dramatic in thinking or perspective, the world is black or white to an extreme, one is very self oriented and sensitivity to environment and others is often skewed or missing but one lacks self awareness. One is also easily distracted, restless and impulsive. In time, again with work, this changes again, as one develops self disciplines and self management. It is like going through being a toddler, a child, a teenager and then a young adult in a consdensed time frame – with all the associated cognitive and emotional changes that accompany those stages. When an individual – with the help of a therapist, self-education, and or friends and family works with you to help you rebuild and restore skills and awareness you can heal – but when you are held up a mirror which says ‘accept your less-than status’ you will not. I do understand that for some folks the extent of injury is significant and the brain may not be able to make recoveries, and I do believe that even those who recover a great deal are indeed different – but I don’t think it’s the acceptance of difference but rather it’s the ability to keep pursuing excellence and improvement over time – which then leads to a re-creation of self.
3. Even the changes in what we feel about others and how we relate to the world go through processes – as our sensory systems restore filters and make sense out of our senses, as we recover our connection to our bodies (remember how as teenagers your body was almost an alien thing – well that was your brain trying to catch up and now it’s happening again…), as we struggle to recognize and identify our feelings, separate our emotional responses from our reasoned responses, as we learn to be aware of and caring of others again (yes, you have to LEARN that) – as you go through these things your feelings about the environment, about the people you love, about family and friends – they all are impacted. On top of which we also frequently have responses and reactions to the responses and reactions of those around us – most of whom, even when deeply compassionate, simply haven’t a clue of what this experience is like.
4. Another interesting factor is that I have found – almost universally – a deep and abiding hunger for knowledge and learning among mTBI folks who are struggling with recovery. It is almost as though knowledge is food or fuel for their brains and so they crave it. I have seen this so often that it amazes me that no researcher has ever noticed it.
I think that these kinds of ‘truisms’ reflect ever more that brain injury does not produce a loss of intellectual function so much as it produces an altered self, a disjointed self that must reconnect and recreate a whole and unified human being. There remains some memory of the prior self – at least for a long time – but in time the rebuilt self can become home But it takes practice, it takes effort, it takes safety and freedom to fail. It takes the capacity of others to not pigeonhole us into a set level of functioning, to not limit us or punish us for going through natural stages.
As I said above most folks can’t image this, they simply cannot. It’s hard to know what it feels like to lose your sense of ‘self’ – it would be easier to describe loss of feeling in your touch than loss of the sense of who you are. Nor can others appreciate the devastation that causes – in work, in play, in relationships – and the ensuing isolation that many mTBI folks seek simply because interaction is like tap dancing in a minefield. Whenever I talk with TBI survivors at length – especially those who have worked at recovery remade their lives I am amazed by the little things that come out that resonate deeply for me – often they are the smallest of things – like going through a long phase of mis-reading people’s responses to you, or not seeing things even when they are there – whether in print or an object in a room – not blindness per se but what looks like being obtuse but is probably some faulty mechanism in transmitting visual image to your brain and interpreting it. Or maybe its how when we get tired we tend to say dumb things, or lose things or act confused – not just sometimes but always.
PS. I agree with most of what the woman in the video says with one exception – the emphasis that I see among TBI specialists is to ‘mourn the loss of old self’ and I think that this notion of self-death is debilitating. I think that one just has to practice the sense of being self till one feels at ease with it. This may be saying the same thing but in one case one is consciously being aware of difference, in the other case it is more like building up and strengthening – more positive.
Sorry for the spelling errors in previous entry – late at night and too tired to reread !!
m -
1. I totally agree. It is quite surprising that nobody really studies this much. One of my hopes for this blog is to document my own experience, so that others can either recognize their own experience, find similarities, or learn more about this phenomenon. Lack of focus on this seems, well, a bit negligent to me. When your sense of self is disrupted, without any explanation or help in understanding the changes that are taking place, it opens the door to tremendous stress, which in my opinion contributes to the PTSD that often goes hand-in-hand with TBI. War isn’t the only thing that can cause post-traumatic stress — a loss of your self, at the same time you’re expected to “get back to normal” can do it, too. Between the disruption in the brain’s wiring and the biochemical stress soup we marinate in, it’s a wonder any of us gets through it in one piece.
2. Wonderful points about “re-growing-up” — yes, when we have folks working with us to become whole again, recovery has a chance to progress. But when we are pressured to accept the “fact” that we are never going to be 100% ever again, it takes a huge toll. If you watch the full video series of this young lady on YouTube, you can see one at the end of the series, where she’s still struggling, many months on down the line, wondering if she’s ever going to have her life back. It’s frustrating to watch this play out — especially in light of the things she said earlier about having to recognize and accept her limitations. A perfectly fine life whose light has been systematically dulled and dampened by a well-meaning but deeply flawed and misguided system meant to help her.
3. I concur totally with your points here, and I’ve actually been thinking a lot along these lines, lately. Having to learn things all over again, that you “should” know… it can be terribly frustrating, but at the same time, it can be tremendously freeing. It’s like we get another chance to recreate our world. I find that letting to of my old perceptions of how things “are” can be quite useful in doing this.
4. Knowledge, knowledge, and more knowledge. I read about the concept of Idea Density and its prophylactic effects on cognitive degeneration in “Aging with Grace” — the book about the Mankato, MN nuns who lived an average of 10(?) years longer than the general populace, and often remained lucid and mentally intact to the end of their lives (even in the face of advanced Alzheimer’s, some of them showed absolutely no sign of cognitive impairment when tested). Idea density is about how many distinct ideas are contained in a piece of writing — the higher the idea density, the better it is for the brain. Technical and scientific texts score very high on the idea density scale. I suspect that’s why I’ve been so intent on learning and studying — it’s like my brain knows it needs the exercise, so I go for it. In many cases, I don’t fully understand what the texts are about, or when I think I do understand, it turns out that my concepts are flawed, which I guess disqualifies me (I suppose) from scholarly publishing
But it’s really, really good for my brain, so I do it anyway. So what if I don’t “get” everything 100%. My brain just feeds off it. Another piece of this could be related to the concept of “opioid idea novelty” (my way of describing the discovery of pleasure we get from learning new things compliments of Irving Biederman at UC San Diego, I believe). When we learn new things, it can be like morphine/opium for our brains (and bodies) — it can be tremendously pleasurable. So, in the case where we’re in crisis over our disruption of self and the complexities that come from it, we have learning and novelty to cut the pain. This, I think, could possibly be one huge factor in the success rate of recovery. And if that’s the case, it opens the door — possibly — to the idea that returning vets with TBI can be educated and taught new sorts of information and coping skills — provided that the information is delivered to them in a way that makes sense to them. The armed forces have a very distinct way of training soldiers, from what I understand, so maybe if learning materials were developed that mirrored those styles of learning/teaching, some help could be offered. Just an idea.
Loss of self… or disruption of self… I think disruption is more like it. If your house burns to the ground or gets buried in a mudslide or gets flooded… or your purse or wallet gets stolen, you don’t necessarily interpret it as meaning that you’ve lost your whole identity (well, some people might). You rebuild. You clean up. You take steps to deal with the situation. Certainly, the loss of your home or money/credit cards is traumatic can be a huge hit, but it’s not necessarily about our innermost core selves. We have social and cultural props in place to help us deal with it.
Not so with brain injury. There, when you get flooded/burned out/buried, there typically is no help, and only if you’re extremely lucky, do you ever get help. I myself got help by total trick of fate. There was no logical reason I should have even ever realized that I’d had all those traumatic brain injuries. It was a fluke, an unlikely chance, that I had the time and the opportunity to stop and take a look at what was going on in my life — I was caring for a sick relative full-time, away from my regular job, and I had a lot of time to ponder illness and my perceptions of “something is wrong” were heightened far beyond what was usual. I’m extraordinarily lucky that I had that happen to me, and I’m also extraordinarily lucky that I live in an area where I have access to help within a 2-hour drive… and I work in an industry that gives me flexibilty of hours.
Many, many, many people do NOT have that kind of luck or that kind of bandwidth or that kind of opportunity. And they flouder. Boy, do they flounder.
I can really relate to what you’re saying about mis-reading people’s responses, and not seeing things when they’re there. That’s been happening to me, lately. Especially not seeing things when they are right in front of me. I’ve been tired and stressed, the past several weeks, trying to get work done before the end of the year cut-off, and it’s been taking its toll on me. More reasons to pay closer attention, slow down and really work with everything around me in a more mindful way. It has slowed me down tremendously. I was thinking about this the other evening — how my life has become so much more deliberate, more slow, more steady, to the point where I do maybe 1/3 as much as I used to do. But now the things I DO do are much higher quality than before. I’ve struggled with screw-ups my whole life (not understanding why). Now that I understand why and have strategies to use to deal with them, things are much less chaotic for me. But at the same time, I’m moving at a pace that sometimes bores me out of my mind. I feel slow. I feel retarded (in the literal – musical – sense of the word — slowed down). Maybe I should say “Adagio” — A tempo having slow movement; restful at ease –but it’s not restful and at ease all the time. Sometimes it’s just a torturous obligation for me to slow down — but if I don’t do it, I’m asking for real trouble.
PS. I agree with you about the mourning business. Certainly, we need to acknowledge the fact that we’re letting go of something that no longer works. But we tend to treat TBI changes like the loss of a limb, rather than a change of clothing or loss of our home. Granted, issues with memory and physical problems and a host of other capabilities can be more or less permanent. But where the brain is involved, there is actually room for change. I’m sure plenty of people would argue with me on that, saying I need to accept that TBI can be debilitating and life-altering, which it can. And yes, I know it can. It’s often tragic. But at the same time, we’re talking about the brain here, and by its very nature it is inclined to change and grow as you learn. Stopping new learning and new activities because “you’ll never be back to 100%” or “you have to accept your diminished self as a harsh reality of life” is about the worst thing any of us can do. Ultimately, for me, it’s about being able to find activities and lessons that both appeal to me and teach me something. I can’t get hung up on how I’ve screwed up, because in many cases I’m still (re) learning how to do things, and screw-ups are in the nuture of learning. Doesn’t have to be a biggie, if I choose to not let it be that. But the minute I get hung up on ways that I’m deficient or not everything I’d like to be, I stop my progress and make it that much harder for myself to become the person I want/choose to become.
Ultimately, it’s a balancing act that everyone needs to learn to do for themself. Main thing — don’t give up. Just don’t. You never know when things will turn around.
BB –
1. I have seen – as a reader of your blog – a lot of change in you over the past year. Interestingly
it has mimicked some of my own changes. I see these changes as reflecting the evolution of healing and rebuilding self. It is not however, a straight line of recovery, there are many times when things fall apart and take two steps back (especially with high stress and fatigue) before they move forward again.
Also like me, I sense that you know that you must remain vigilant to a degree to maintain progress and keep things on an even keel; though I do believe that over time it gets easier because it starts to form a pattern – a pattern that become natural and almost instinctive. It took me several decades to get to the point I was before I had my accident; it may take several decades to once again get to that familiarity with this version of me.
It is my belief that researchers don’t focus on that much on self much because there is no drug to ‘create self’ nor is this a mental illness that can be charged for – it’s an injury whose cure is effort, work, and time. It requires that society be adaptable and flexible and accommodating – which it will not be of course. Because of this – and perhaps also because the idea of self potentially crosses over into the philosophical and religious arena making it seem vague and fluffy – self is not something that gets much attention – nor is it necessarily a part of any rehab program other than the usual psych counseling about letting go (but no building up gets mentioned).
It’s unfortunate too – because this is a weakness in all aspects of healthcare. While tbi is a direct ‘hit’ (so to speak) on self I think that most major illness also alters the neuronal circuitry in some fashion – and consequently on a much lesser level impacts our sense of self. The brain responds to injury, to pain, to loss, to trauma –and that response could be alterations in pattern responses, in neuron firings – and effect emotional state, perspective, cognitive skills etc. (for example data suggests that PTSD results in worse cognitive function with a TBI – so that severe TBI – where there is frequently no memory of the event – often have less severe brain injuries . People who have experienced any kind of trauma often speak of this sense of alteration, of different view towards life, towards themselves, their interests etc – – likewise so do those who have survived serious health issues or physical danger.
2. I think you are right about Vets – I also think that part of the problem is that the Vets do not
have anything to ‘go back to’. One of my greatest handicaps has been that I did not have a job
that I could return to after my accident because it was a contract that had run out (and a very different line of work for me) – and so I was left floundering. My fund of knowledge – that is those deep skills and abilities that I had built up over the years remained – I could easily talk about concepts and work and knowledge I had – but accessing them in the right circumstances, creating opportunity to use them, and deploying them was altered. (btw mtbi usually does not affect fund of knowledge, it may affect ability to access prior knowledge or how to communicate it or put it together but you can often regain this to a large extent WITH THE RIGHT EFFORTS). Since I had no place that had a prior perspective of me to return to, a place where I could be given leeway to recover, I struggled a great deal – I simply couldn’t start in a new position without a real battle – I came off as a bumbling idiot at best because it was too much new stuff and I was not good at new stuff. Consequently – and in part due to the economy – I was forced to take jobs that were ‘less skilled’ but even these were unfamiliar and that required abilities that were impacted by my accident, sometimes even more so than the ‘professional’ jobs since hourly wage workers must frequently rely on memory, customer interaction and things like counting money – all of which are the very skills I struggled with. I didn’t fit in anywhere. Without a prior place, without a previous reputation and history it was rough going.
Vets are in a similar position – the skills they have are from the military, they are young enough (usually) that they don’t have prior career skills (no deep fund of knowledge), and then they return to an environment that cannot give them the space to recover – one that is both challenging and
supportive. Often this exacerbates depression, leads to frustration and abuse of alcohol and drugs. Family in turn gives up and this makes it worse.
But even for those who do return to work in a short period of time have struggles. They may not be able to assess just where the problems are or where the issues lie or how these problems will manifest themselves. Some things – like sensitivity to light or sound – may be big and obvious at first, have a major impact and so when that goes away you may think ‘okay, now I am fine’ – but then you discover all this minor stuff, the social faux pas, the false memory, the confusion and distraction – all of which are random and subtle and horribly debilitating and embarrassing. You think you are fine, you feel fine, look fine, talk a good game – but then there are these glitches…
3. I will have to look at the rest of the video. To me the hardest thing about re-building is the
ambiguity of it all. You simply cannot be goal oriented, cannot aim for a particular endpoint –the goal is progress – progress of any kind. For a long long long time you struggle to find place, self, unity – and each time you think you are okay and then you discover that you are not; but it’s only visible to others
after circumstances demonstrate where the issues lie – and the issues keep changing because
as you heal and improve on one layer the more subtle and in some ways insidious, problems
come out.
The things I struggle with now are so minor but it’s the fact that they are so minor that makes them so tricky – others just cannot believe when some ‘gaffe’ rears its head that it’s tbi – it must be because I am a dolt, incapable, disturbed, lazy, or something (some deep psychological issue – when in fact it’s the opposite, by not appreciating that it is tbi it creates a psychological issue).
I know exactly what you mean when you say that you remember something wrong and you are absolutely certain that you remembered It correctly. Or the times when I am talking to someone who is important and I get distracted by the ring on their finger or their manicure or the fancy pen they are holding or a sound outside the window– and for a couple of seconds that is my focus and I lose track of what they are talking about (or like you said I start thinking about the first sentence they said and then miss the next one). The possibility that I have a faulty self-filtering and awareness function is beyond people – and that I can improve and get better with this with the right circumstances and support.
On the other hand I don’t want to be condemned or perceived as addled or damaged and ignorant of myself. In truth I probably have more self-insight than most folks – my gaffes are not psychologically failures of awareness, they are more like a needle skipping a track on a scratched lp. I can’t see the scratch till the song is played, but once I know where it is I can fix it. That’s the key factor here – I am not stupid, not unable, not unstable – but I must learn how to get to where I want to go, I must relearn how to interpret others behaviors, I must learn how to remember, to listen again. Family, friends and work all play a big role in re-building but they are ignorant of what is needed – and I am blind to telling them. This makes for a tricky situation indeed.
4. It is helpful to be able to let go of perceptions – but it’s also a struggle – remember we have lost some components of our thinking and so we probably hold tighter to our thought patterns – even the faulty and damaging ones – than many folks. We aren’t necessarily being stubborn – those thought patterns represent ‘us’ or ‘self’ and so we don’t want to just toss them. In this way we are like teenagers who are ferocious about their identity even in the face of ridiculousness. Yet at the same time when we do make a change, when we feel able to give up preconceived notions it IS empowering and delightful. This is an experience that I think many people who have faced a crisis have – its why people say things like xxxxx was the best thing that ever happened to me (where x is a trauma of some kind). TBI is NOT the best thing that ever happened to me, it sucks BUT it can be a chance to make change, to rebuild myself emotionally and cognitively in a way that is stronger, even nicer.
In the initial days (weeks?) after my accident I found the very act of thought difficult; it was as though things had slowed down so much that I could experience in real time every action that was involved in thought – like a motion picture seen frame by frame. One of the impacts of this was I realized how complex even the most mundane and simply thought or action was – how many systems were involved, how choreographed the whole process was, what a miracle thought was. The fact that I had once had thoughts so easily and quickly (and without a thought so to speak) was amazing. In the ensuing time frame I have come to this awareness again and again about a broader set of behaviors and interactions – things like dealing with complex social circumstances in the professional world, attending meetings, managing a program. None of those things are intellectually beyond me, it is simply that in the past keeping track of the various threads, responding appropriately, remembering what was important, reading people, seeing the critical things that I needed to be aware of – all that sort of stuff just sort of flowed. Afterall I spent years working to develop this rich data set of information and actions, a complex and intricate web of knowledge and responses. I still have that – but sometimes the translation drops – like losing a cell connection for no apparent reason. Emotionally this is hard because it makes me feel less confident, less certain of my ability – but it also makes me appreciate how involved even a casual interaction can be. I also get frustrated because I seem to project a very different persona than I did before and that can also be a challenge since I don’t think of myself as different. Changing a person’s brain in even the most minor way has such profound effects.
5. I like the idea of opoid idea density – that seems right. I also absolutely believe you are correct again
about vets and knowledge – the problem is that we don’t know how to deliver knowledge and skills to these guys (and gals) in a way that will work . Another problem is that we want to be able to see a positive result in a short period of time. A brain cannot be rushed. But you CAN prep the soil – that’s
why I think HBOT, meditation and physical activity work. You can also make it more manageable by providing the right environmental supports – the more stressors (financial, familial, etc) the harder it is for a person to develop the communication and coping skills they need to participate in the world at large. You can also develop the muscles needed through games, puzzles, work, volunteer programs, and other activities. Routines and regular and consistent effort can help strengthen and reinforce the learning experience. I think this is why scientific literature reading EVEN when you don’t understand it, can be a big plus. I did the same thing – read stuff about nuclear physics and geology and quantitative economics that I normally would have avoided – and it felt good to do this, whether it ‘sunk in’ or not.
6. Loss of self… or disruption of self… Again I like this analogy – disruption is correct. I am ‘girl…disrupted’. I have lost the integrated identity but I haven’t lost all of me – indeed I have lost only parts of me – often only very small and scattered parts – and it is THAT odd and diffuse loss that has plagued me; I am still so much of me but I get run off my own tract.
7. There is limited help And its not very useful for mTBI – too many of the pros and experts do not speak to the very folks they are trying to help. No one had ever recommended meditation, exercise, board games, and reading science journals as a way back. But those are exactly the things that worked. No one ever said do lots and lots and lots of calculations and sentence decomposition (or other parsing routines that tax your working memory), nor did they explain HOW to go about those things – starting with maybe 2 minutes a day and slowly working your way back. Instead they recommended neuro-chemicals and disability and graceful acceptance of a limited life thinking that would reduce frustration and stress; instead it increased it.
7. As you say – and I agree – there are varying degrees of rebuilding – and not every little thing returns in the same way or the same degree as it was before – some things get lost and stay lost. However I think that to some extent that is true of all adults, as we mature our brains change and we disengage certain functions and aspects of ourselves, we lose memory flexibility (though we hone other skills) – for mTBI folks however the changes are acute and more profound – and so they are more keenly felt.
One of the great difficulties then is how to provide support and help for individuals with such a varying
and open ended outcome experience. Most mTBI folks I know have said that 12, 15 years later they
are still experiencing minor positive changes – so recovery doesn’t have an endpoint. And not everyone
wants to put in the effort – lots of this is hard and does not feel good – it’s not like a headache but it is
cognitively painful in some way. My brain does not want to do this stuff sometimes even when my will
power is there (another aftereffect). So I can appreciate that my path is not the path for everyone, and that there is a delicate balance between pushing a person and respecting their choices (even when they lack self awareness).
I would like to see a mentoring network for mTBI – so that fellow survivors could help those who are in
earlier stages of recovery. I can – to some extent – accept the perspective of another tbi survivor better
than I can from a famly member. They have walked the walk and have no self interest in what I do.
Many, many, many people do NOT have that kind of luck or that kind of bandwidth or that kind of
opportunity. And they flouder. Boy, do they flounder.
8. I like the description of Adagio. Exactly so – adagio living. But yes, there are times when the racehorse
wants to go, go, go and I cannot stand to do one step at a time. Still…I am grateful, I know how far I
have come. I think that it would have been more painful if I knew how painful it would be, I think that
many folks did not think that I would achieve what I have – and a few are probably smiling saying ‘I knew
you could’. Although I may forget some data now and then when it comes to those that reached out to me- I will never forget them – they literally saved my life.
m –
On the one hand, it’s utterly maddening to think about how poorly served most TBI (mild, especially) folks are by the very structures created to help. I think that’s the hazard of having well (or abstract, theoretically oriented) people design programs for those in need. So much about the mental health and medical establishment (in my opinion, anyway) is based on flawed assumptions and flawed theories — for example, Sigmund Freud originally believed that the Viennese women who were coming to see him with all sorts of sexual hangups had been sexually abused or molested and that was the source of their neuroses. But his colleages and professional peers put so much pressure on him, that he abandoned that theory (which in retrospect, was probably spot-on in many cases) and came up with this convoluted Oedipus Complex business that’s (again, in my opinion) succeeded more in confusing and roping people into years and years of self-perpetuating analysis, than actually relieving human suffering.
Psychiatry has been traditionally used to police people’s behavior, their sexuality, their social identity and herd them into the proper part of the barn they “should” belong in. So, there’s only so much I expect from it, frankly. (And the fact that “the Defense Department has appointed a Navy psychiatrist, Capt. Paul Hammer, as director of its Centers of Excellence for Psychological Health and Traumatic Brain Injury” (see http://ssgtleslie.wordpress.com/2010/12/06/defense-taps-navy-psychiatrist-to-head-tbi-center/) sorta kinda worries me.
But I digress. I guess what I’m trying to say is, in my experience, there’s only so much we can expect from “experts” when it comes to TBI. They may have spent x-number of years in school (uh, oh), and then spent x-number of years in practice, but from what I’ve seen, being in the midst of their professional peers has a way of blinding them to true issues, while they seek to maintain their place and status in the social structure of their organization. I’m exceedingly fortunate that I’m working with a neuropsych who is outside the traditional system. They were in it for about 30(?) years, then they went out on it on their own, armed with full knowledge of just how counterproductive traditional rehabilitation practices can be — especially ones that revolve around “accepting your limitations” and resigning yourself to a lesser life.
In all honesty, I can get pretty enraged over this collusive mindset that may have been (unconsciously) created to absolve rehab folks of their inability to actually help in the long term. It’s like they haven’t gotten their acts together, and they haven’t figured out how to help people over the long term, so they decide, “Oh, then it must not be possible. I have all this education and training and experience, and none of it tells me how I can make this happen, so it must not be possible.” Do they question their fundamental assumptions and their limitations as outsiders in the world of TBI? Some may, but people are involved, and where people are involved, there are magical excuses that bubble to the surface to keep folks from being debilitated by self-doubt and recrimination. And all of it is implicit, not explicit, so nobody can see it. And heaven forbid if you challenge them on it.
Anyway, enough ranting.
On the bright side, I find it very encouraging that you’re seeing parallels between our recoveries. This is delightfully subversive, as it is one small piece of evidence that we need not all be separated by our “specialness”. Saying “every brain is different, so no two recoveries are alike” is fine, if you’re a scientist whose career and reputation is based on carving out your own piece of theoretical territory which only you can inhabit. But when it comes to actual human beings recovering, it’s a piss-poor excuse.
People need connection. We need collaboration. We thrive on it. Especially when we are so lost and disjointed and disrupted in the midst of our TBI recovery process. Just hearing that another person can’t go out in they daylight without sunglasses on, when they are tired, gave me such hope, when I was really struggling with my own light sensitivity. And reading people’s words about struggling with balance and nausea, for no apparent reason, helped me see that I was not alone.
When your personality is disrupted, and your sense of self takes the hit(s) that come with TBI — and not one bit hit during the injury, but a million little hits throughout the course of the ensuing weeks, months, years… seemingly without end, sometimes — just hearing that someone else struggles with the same problems is a much-needed balm for the frazzled nerves.
Every brain may be different, and every recovery may be different, but we are all people. Regardless of gender, color, ethnicity, class, orientation, marital/family status, religion… whatever. We are all people. We all have the same red blood pumping through our veins, and we all have the same need for community and connection.
We need mirrors. We need to see ourselves in others, to be whole and be connected, regardless of our individual particular distinctions. And telling us that we are unique and unlike any others and we can’t possibly know what to expect and that we cannot turn to others for help and clues about how to get better… well, that’s a form of cruelty borne of ignorance and medical bet-hedging. And it has no place in TBI recovery.
That’s my opinion, anyway.
So, where does that leave us? The millions of folks who have sustained TBIs and concussions and ABIs… where does that leave us? How do we get help? How CAN we get help? I think you hit the nail on the head, when you talked about the people who reached out to you. I have had only one person actually reach out to me, with an understanding (and an interest in understanding) what I was going through, and an interest in helping me — rather than helping themself feel better. Family members have not helped. Friends have been skeptical at best, dismissing at worst (“But you’re so smart!”) The one person who actually gets it and can help me is my neuropsych, who I truly believe helped me pull back from the brink. I was literally on the edge of complete meltdown and descent into a whole new world of hurt when I found them. For that, I am hugely grateful.
Of course, there have been hesitant cheerleaders along the way — friends who listened to me talk about my life, but refused to get into much discussion about the role TBI played in my difficulties. My spouse has been making much-needed changes in how they relate to me, as I have been towards them. But they really don’t care to talk about TBI, other than to reassure me that my brain is fine (“See? You can really do it! You’re not brain-damaged!”) The concept of being able to heal and recover and come back from brain injuries is ever foreign to them. They just don’t want to think about it.
Who does? It’s scary and uncharted and makes everyone — and I mean EVERYONE — nervous.
So, why go there?
In the end, everybody has their own path, I believe. We can draw from others’ experience, strength, and hope, for fuel, but we all have to walk our own paths. Here and there, we can find small (or large) pieces of encouragement from the stories of others, and we can stumble upon tasty bits of information that sustain us for years to come and literally change our lives. It certainly is a journey, that’s for certain. And there is no lack of learning.
In the end, the simple things matter. It’s the basic things that count — good nutrition, good exercise, taking care of our physical bodies to support our activities, building stamina to stave off the hazards of fatigue, and keeping open and flexible to adapt and change and learn and grow.
There is some letting go that’s necessary, but as you’ve said, the building up is critical — a critical and often overlooked/dismissed requirement.
When the TBI rehab world stops giving up on us and telling us we just need to accept our shattered selves as our permanent selves, then they will be able to make good on their promises. Until then… what they do will remain at least in part, academic.
this moved me to the point of connected emotion and that hardly happens anymore. it gave me some hope.. thanks.
You’ve very welcome. Thanks for writing and letting me know.
It was not until so many years later and after I had became more aware of self did I realize that I had the self. At that time, I had tremendous need to talk about my experience- step by step, but the people helping me had already privately made very wrong assumptions about my character and behaviors. I was dismissed and shown the way to disability even by my well-meaning best friend. From there my self became more distant again and I “gave up”. But the fact that I am writing now tells me that there is some part of me that has not given up. I have to learn to be my own best friend but the not knowing a “self” in ways other do, makes it hard to make peace with it and to self-nurture it. The writer above I am in agreement with. Friends and family and even spiritual or church leaders are not really helpful. They usually want to blame me and I am in ways willing to be blamed for there is no one else to blame. And there is very little me to stand up. The thing that complicated things is that people saw me as “smart”. I believe that a part of my mind was stimulated that had remained dormant and I did become “smarter” in their worlds because I had no ego and became more objective. In a way, the solutions to my problems are pretty much the solutions to human beings without TBI’s. It is to be content with what I have and to be a part of community. Unfortunately, I had no idea how to go about this. I ran away literally and now looking back the treatment of depression associated with the TBI and a predisposition anyway towards the melancholic was both positive and negative. I needed to be helped from the zombie stage that was left after two years passed. But the anti-depressants may have helped make a manic-depressive tendency that then began to be seen as “the problem”. I’m not sure if professionals did not care enough or if they were even scared of the unknown and complexity of a shattered self. One which could have detailed memory at times and be able rationalize well. It was the loss of a sense of self and an amnesia in a way, not of the biography of my life but of the integrated personality that formed with those events of a lifetime. Thank you for your posts. Please comment and try to suggest another step at age 50. I do not want to give up.
Thanks for writing – you have expressed so many things that many of us have in common. It is true that sometimes the people closest to us are the ones least able to handle a shift in who we are, or who they believe we are. And it is very easy for them to dismiss our issues for one reason or another. One of the reasons I believe the people close to me refuse to believe that I actually have issues, is that to admit this or to see it would threaten them – by “threaten” I mean that a big part of their lives would appear compromised or undermined in some way. We are far more important to others than we realize, and they depend on us being “who we are” so that they can continue to know “who they are”. When we cease to live up to their expectations, or we are a way they cannot get their heads around, we seem (to them) to be “mirroring” something that frightens them. Something that might be “wrong” with them — something that is unfamiliar and strange and sometimes terrifying.
I have reached this conclusion after years of trying to communicate my issues to people. They — every one of them, without exception — are so deeply invested in their own perceptions, and they base so much of their own sense of self and self-worth and self-image on those perceptions, that they cannot begin to even entertain the idea that there might be more going on with me beneath the surface than they can imagine. And that that “more” is not so great – that it’s painful, confusing, frustrating, and keeps me constantly guessing and on-edge.
Ironically, this is the most true of my friends and family who are the most educated. They have their mind made up about me, and that is that. But what I believe they are doing is protecting themselves from self-doubt, because they have invested so much time in their own education and intelligence. When that is questioned, they just can’t deal. And they think they are too smart to be susceptible to that deepest of existential fears.
Gurus and leaders are of little help to me, I have found, perhaps because they are so invested in being all-knowing, but what is happening with me is quite hidden — I’ve made sure it stays that way. Even those who have invested many decades in understanding TBI have proven limited. Because, after all, they are human. And ultimately they want to think the best of me.
They just don’t seem to realize that acknowledging my issues is a step in the direction of thinking the best of me.
Well, enough of my prattling. All the best to you – I will write more later when I have time. The weekend is nearly here, and I’ve had lots to think about.
P.S. Don’t give up. I’m nearly 50, and I’m not, so you don’t have to, either.
Enjoy your weekend and I won’t expect any kind of comment on this, but feel that I want to write more. It baffles me what happened to this self that seemed to change so dramatically from a subjective point of view but apparently not so for those who knew me. If It baffled me so much then I could see it would baffle others. It was as if before the time of my tbi, had a prior self existed but if asked I could retrieve my biography and memories with great accuracy. In fact, I remember more details from the time of my tbi than most relatives. I never knew to grieve a lost self until years later when I was put on Lamictal. And because I had a history of severe depression I tended to put everything in that category. I had blocked out the whole experience of being unconscious or near that at least, for a period of time. Unfortunately I was technically homeless at the time and the records from that hospital did not follow me. And the memories did not follow me. Still today that whole experience is somewhat distant. I only know that after getting released from that hospital that I struggled from an estrangement from a former self. When I begin to describe the experience that image of the bird from the children’s book “are you my mother” comes into my mind. He falls out of the nest and continues on a journey with an upbeat personality almost. When I saw people who had not seen me for years I heard comments like “when did you get so smart”. But inside I felt so dumb or at least out of sync with an ongoing sense of self/time or that ability to understand the communications that others seemed to know instinctively. And I had problems with my “filter” and judgement and was seen as naive by most of the new people in my life but was not naïve before the tbi. My problem that continues today is this struggle for context. I can remember things but isolate them in relation to other things. One thing that stands out is when I was teaching ESL a year or two later and we were on the chapter about brother/sister etcetera. And I had a strong emotional response but did not know why. I had to leave the room and I was crying in the room next door but did not know why. Also a woman that I dated for almost a year was surprised when I told her of a brother and she said that she did not know I had siblings. She was very shocked when I told her that I had 6 siblings. It did not seem like a deal to me, but when I look back and analyze that and how I was talkative and very open, it was difficult to believe that I would have not spoken of family on any occasion with her.
Also looking back I no longer had any interest in things that I did prior. For example, I did not follow any sports team and for about ten years I knew nothing about things that had interested me for years. Sure our interests change over the years but not in the way it happened to me.. so abruptly and without any consciousness about it happening. It was not that I had chosen not to contact any friends/family that were once important to me, it was that it did not occur to me much. And if it did I knew down deep that something made me uncomfortable with that thought. The apathy and fatigue had multiplied but I only saw it as depression which in many ways it was. Doctors treating me only saw my depression and treated that. Also I began sleep talking so much after that and I never knew why. The sleep talking seemed to come from no where. Long conversations out loud all night long in my sleep. And many times in the language that I acquired after the tbi. Even though, I do not think in that language. On some occasions I would wake up hearing a song and on one occasion I looked up the song to see if the lyrics in my mind were right and they were. I knew the whole song practically and did not even know that I had learned it. So much strange stuff that when I attempted to tell people it looked as if I were looking for attention or trying to be “different”. Nobody took me seriously much and I did not either. And still today I do not attribute everything to the brain injury because before that I had such depression and was even hospitalized for that. I like reading from someone on your page- the importance in just going on and not trying to figure everything out or focusing on the losses. But I wake up grieving even crying on many mornings. Well I relate much to what you say and find your writing extremely insightful. Thanks.
Hello again – and thanks for writing.
What you are saying makes a lot of sense to me, because it is very similar to my own experience with regard to the loss of self. It has baffled me to a great (and disturbing) extent as well, how I could become such a stranger to myself, yet everyone around me thinks there’s nothing wrong and there’s no change in me. The one person who does know there’s been a change is my spouse, who has had to put up with my mood swings and emotionality and rage and “laziness” (can’t get started on very much at all) for the past 22 years — moreso in the past 8 years since my most recent TBI — especially the can’t-get-started stuff.
It sounds familiar, hearing you talk about remembering some things in such detail, but also blocking things out. I was also a huge fan of “Are you my Mother?” when I was a kid — I was almost obsessed with that book when I was a kid — now that you mention it, because that little bird kept so upbeat in the face of so many “no’s” — which is how I have usually been in my own life. I really believe that my TBIs when I was younger – I fell a few times and got hit on the head with a rock – made me predisposed to “irrational” optimism. It has always seemed rational to me to be optimistic and hopeful, but apparently, it might be neurological — check out http://www.forbes.com/sites/daviddisalvo/2011/10/10/pollyanna-had-brain-damage-study-claims-unrealistic-optimism-is-the-result-of-faulty-brain-wiring/
I hear you about the medical records. All the times I got hurt, there was either no medical care available, or nobody thought I needed it, or I hid my issues so “the doctors wouldn’t get hold of me”. So I have no medical records of all my injuries. As far as the doctors are concerned, I’m making it all up for the sake of attention. Those doctors are jerks and a-holes and clueless posers. I need help with this stuff, and they can’t/won’t help me. At least I have found one doctor who can help me, and they are good. Up until the past few years, I could not talk to doctors or pretty much anyone in a negotiating situation, because I couldn’t follow what they were saying. I’ve been practicing that with a neuropsychologist, so now I can talk to doctors, so now I can get medical help, if I need it. That may or may not be a plus.
Anyway, back to the self. I have observed so many profound disconnects between how others see me and how I experience myself, that I’ve had to really ponder it. The disconnect is simply too jarring to ignore. I have reached the conclusion (for now – it may change later), that people mainly interact with others for the sake of reminding themselves of who they are in relation to others, and they pick and choose the parts of us they notice, based on what they want to notice about themselves.
Does that make sense? I think that many people are deeply insecure and fearful, and they look to others to quell their fears and make them aware of “who they are” — even though it’s not actually who they ARE, but who they think they are/should be… or who they want to be. I believe that most people walk around with a fabricated sense of self that is based on a collection of clues from others — most of those clues being social rewards (acceptance, praise, admiration) for being a certain way and playing a certain role in life.
As an example, I know a lot of people whose main ambition is becoming a cliche of their “type” — to be the stereotypical nerd or computer geek or lady or ladies man or business person or doctor or lawyer or therapist or minister. They find a role that they feel comfortable in and are rewarded for, then they put all their energy into playing that role in life and becoming a quintessential version of that – and they become almost exactly like others in their category, except for a few minor details. There are very few truly unique people I have observed — most of us, I believe, are hiding out in our homes or somewhere else safe because the world in general doesn’t tolerate us well. And we get beaten up — in one way or another.
So, when it comes to others perceiving us, they look for the parts of us that mirror them — and if the parts of us that have changed after TBI or some other phenomenon aren’t on the radar they’re using, then they don’t detect the changes. They literally cannot see it, because it has nothing to do with what matters to them. Of course, when things change with us that DO matter, then they notice. All hell can break loose. And they often disappear. Or they try to make us pay for “failing them” in some way or another.
These are my observations, after trying to get some recognition and assistance with my TBI issues, and being either ridiculed or dismissed or pitied or sanctioned or treated with kid gloves and like a “retard” after disclosing. Incredulity is the most frequent response, by far. I’m not sure which is worse – incredulity or pity and kid-gloves.
Emotional responses that just take over — yes, sounds familiar. It’s funny – hearing you talk about your experience reminds me how familiar that experience has been for me — needing to step away when the emotion just gets to be too much. When I was younger and in school, I could not just leave the classroom when I would get overwhelmed and be on the verge of bursting into tears. Other kids could tell I was having trouble, and they were not kind. It was pretty bad. So, when I became an adult and was able to choose where I was and could be with, I could take a few minutes to just step away to cry or compose myself, and then go back to my regular life.
Now I understand it is what they call a “catastrophic response” — when things get to be too much for me. I’m doing better about not losing it with other people around, but it never really goes away. I just have to manage it and make space for it. Step away when I need to… and then come back to living my life.
What you said about not mentioning things that others would expect you to — your 6 siblings, for example — sounds really familiar. People I have known for years know almost nothing about some aspects of my life. My spouse of 22 years doesn’t know much about my childhood at all — partly because it’s overwhelming and I don’t like to talk about it, partly because I don’t know what I should mention, partly because anytime I talk about my life, the conversation ends up being about them and their awful experiences growing up. And I don’t care to hear about that crap. Again. My neuropsych gets exasperated with me because I don’t talk about things they think are important, but it just doesn’t occur to me to even think of them. When I’m in a session, I’m there to discuss specific things. I’m not in the rest of my life. Why would I talk about all the other things going on? They’re not happening at that moment.
As for interests that have evaporated… I have a study full of books about things that used to fascinate me. I used to spend hours upon hours studying ancient mythology and history, reading voraciously and taking notes as though I were going to school. I wrote papers about what I learned and gave them to friends, who said I should write a book about my studies — which I could have, but never did, because I couldn’t figure out what I knew that others didn’t, and what I needed to say. I also didn’t know how to communicate with editors or others who read my work – I would get overwhelmed by it all and attack anyone who had comments. Now I have an office that is filled with reminders of what I am not interested in anymore. Now all that consuming interest is gone. Just gone. And I am left with a big space of empty silence in my head where it used to be. Once upon a time, I would read and write for hours and hours, losing myself in every spare moment on my studies. Now… it’s like the “mental bucket” that my onetime “fluid” interest was kept in has turned into a loosely woven basket which doesn’t hold any fluids at all. It just all drains out. Gone. Sayonara. As though it was never even there to begin with. And strangely, I don’t care. I care that I don’t care. I feel like I should. But I can’t work up the energy to, so I just walk away from it and generally ignore it.
I do remember back to times when I was so caught up in things, but now… I can’t imagine how I ever could have been that way. And the change was abrupt, too — like you. One month, I was totally devoted to my studies. The next, it was as though I’d never had any of those interests at all. Weirdly, there was about a year’s time when I was actively doing some of the things that used to interest me, and doing them with great gusto. I generated a lot of notes and a lot of paper, which I neatly organized in neatly labelled folders in a cabinet drawer. But at some point, I stopped going back and opening that drawer and doing the work again, and later when someone asked me if I’d done any writing lately, I told them, “No, I haven’t done anything worthwhile in a couple of years. Zip. Nada. Zilch.”
And a few months after I was convinced that I hadn’t done anything at all, I opened that drawer and saw all the work in the neatly labelled folders, and suddenly I remembered. But if I hadn’t opened the drawer, that part of my life would have been gone forever, as though it never existed.
Looking at that work now, it’s like a different person did the writing. I would like to refine it and edit and make it worth reading, but I can’t work up the interest. That’s gone. And with it, a big part of my former personality has also disappeared.
It is hard. The difference between the old and the new … other kinds of personality changes happen gradually or for an obvious reason, but TBI is a different story. I don’t actually recognize myself anymore, a lot of times. I try not to focus on it, because there’s not much to be done. Plus, there is plenty of other stuff in my life that demands my attention. I try to be upbeat and optimistic and tenacious like the little bird who fell out of the nest, but some days it does get to be a little much.
I guess my solution is not to dwell on it too much, but to keep an open mind and see what I can make of myself. I don’t know of anyone who has ever adequately described the loss of self after TBI. Or maybe I once did, and I just forgot. That’s possible. Some people have written about the importance of subjective experiences after stroke, but that is stroke — it’s not a diffuse axonal injury, and my understanding is that stroke is much more focused and localized than TBI, so it’s a different ball of wax. To strengthen my sense of self, I am trying new things — like watching videos of myself going about my everyday business or talking with people. A friend gave me webcam some years ago, but I never plugged it in because I couldn’t figure out where to start or how to do it (hint to self: open the box and there will be instructions
. I have spent a lot of time videoing and watching myself, over the past days. It sounds a little strange, and I was very nervous about it at first, but it’s actually helping me to see myself as I am in the world, instead of how I think I am in my head. I literally have no idea how I look or sound or move. I have no sense of that. So, I’m observing myself like I would observe the birds and squirrels at the back bird feeder, to see how I am – this new creature who has showed up in my life.
Oddly, I find the video process comforting and reassuring. I’m not nearly as dorky as I think I am, actually. And I can see some of the qualities that others say I have, so that’s good. Seeing that when I smile or laugh I do not look as freakish as I think I do, makes it easier for me to smile and laugh. So many people have told me that I look weird or that I’m a freak, that I generally try to tame myself down so I don’t startle people. But observing myself, I don’t think I look weird or freakish at all, so I can loosen up a little.
Speaking of loosening up, it’s time for me to take a walk outside. Looks like it’s going to be a beautiful day.
Be well. It’s a wonder that more of us *don’t* wake up crying.