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Blog on brain injury - who am I?

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Who am I?

A sense of self is a uniquely human trait, we are capable of recognising ourselves when presented with our mirror-image we get that instantaneous feeling of familiarity and self-assurance so whenever something seems out of place we quickly try to fix it. Besides knowing how we appear, we know our hobbies and interests, who matters most to us, about our job, our studies, who our childhood friends were, memorable family holidays, our favourite comedians, favourite desserts, etc. – all these elements connect together into a whole, which we may call our ‘identity’.

Humans are social beings, even the most apparently anti-social of us make continuous decisions about whom we like, whether we’re making a good impression on others, about what others may think and what would please them, or if we dislike them and how to show or hide it. People we associate with become part of our identity and reflect our values, beliefs, common objectives, generation, etc.

Our identity undergoes most change during our childhood and adolescent years. Pre-adolescence, children are motivated to learn about the world, they acquire new skills very easily because during this time their brains are are at their most malleable when presented with new stimulus. Learning to speak a language feels mostly subconscious and very natural process during this phase. They don’t have a deep understanding of their place in the world as it’s still something they’re learning to understand. As we move into adolescence, however, we enter into an ‘identity crisis’, we become very self-aware, aware that we don’t know ourselves very well. One way of getting to know ourselves is through others, it’s at this stage that we form the most relationships we’ll ever have in our adult life, during which we learn the art of forming and maintaining relationships. Gradually, the older we get, the more we know ourselves and, through experience, the more discriminatory we become in choosing whom to associate with. It goes without saying therefore, that the experiences we have during our childhood and young adulthood shape our identity and that this correlates with pre-determined changes in our brains. Our identity becomes hardwired, effectively.

The “seat of consciousness” is often debated with hypothesis that it may be located, but more recent neuroscience research suggests that consciousness involves several brain areas interacting all at once. Our personality is a crucial part of our identity and is what attracts or repels others, it’s effectively an advertisement of our core values, attitudes and beliefs. Personality, develops throughout our formative years in line with the rest of our identity. However, the key point about personality is that in order for it to develop healthily, an enriched social environment is necessary. Without it, our brains simply cannot develop the social tools we use in our daily interactions. Just like a childhood devoid of positive social relations can have a detrimental effect on the personality one eventually acquires as an adult, a brain injury to regions within the frontal lobe can also cause one’s personality to change. The most infamous case is that of Phyneas Cage, railway worker who accidentally received a penetrative injury to the frontal lobe when a metal rod punctured his brain, entering through the eye socket. Despite the horrendous accident, he survived however accounts suggested his personality had radically changed.

Pre-injury description:

“hard-working, responsible, and “a great favorite” with the men in his charge, his employers having regarded him as “the most efficient and capable foreman in their employ”.”

Post-injury description:

“The equilibrium or balance, so to speak, between his intellectual faculties and animal propensities, seems to have been destroyed. He is fitful, irreverent, indulging at times in the grossest profanity (which was not previously his custom), manifesting but little deference for his fellows, impatient of restraint or advice when it conflicts with his desires, at times pertinaciously obstinate, yet capricious and vacillating, devising many plans of future operations, which are no sooner arranged than they are abandoned in turn for others appearing more feasible. A child in his intellectual capacity and manifestations, he has the animal passions of a strong man. Previous to his injury, although untrained in the schools, he possessed a well-balanced mind, and was looked upon by those who knew him as a shrewd, smart business man, very energetic and persistent in executing all his plans of operation. In this regard his mind was radically changed, so decidedly that his friends and acquaintances said he was “no longer Gage”.”

en.wikipedia.org/wiki/Phine...

The frontal lobe is one of the regions of the brain most commonly injured in an accident. Since the brain is a soft, delicate structure that resides within a rigid bony outer shell of the skull and is located prominently at the front part of the brain, it’s a part of the brain most subject to injury, typically in vehicle accidents or falls causing the brain to squash against the skull. The non-expandable skull also contributes further damage as after an injury a build-up of fluid can cause the brain to become compressed, depriving them of oxygen and nutrients.

My accident occurred at the worst possible stage to the frontal lobe brain region undergoing the most development. In effect, my personal development became intertwined with my rehabilitation from brain injury. Distinguishing the two was very difficult, as any parent knows, teenagers can be unruly and unpredictable at the best of times. The neurosurgeon who operated on me told my parents “he may have a personality change”, but besides that fragment of information nothing else was said and no help was given. They just had to take care of me and hope for the best outcome, nothing was ever predictable or guaranteed. There was no “recovery”, I was a growing boy who would’ve refined himself from year to year. What I would’ve become as an adult is unanswerable and irrelevant as I only know who I am now, identity is a product of past experience good or bad, so my brain injury, for better or worse, is part of my identity. Some people may be repulsed by that notion, especially the people who’ve known you prior to the injury. They may come to expect you to behave in a certain manner, to laugh at the same jokes…to basically be the same.

Their agenda isn’t without principle, after an injury to the brain it undergoes repair processes where unaffected neural circuits attempt to take over the functions of those impaired or lost – a process called neuroplasticity (this process is most active in the first 6 months to 12 months after an injury, but continues on throughout our adult life. It is precisely because of the plasticity of the brain that people can continue to “recover” even decades later, albeit in more subtle ways, although over time they all add up). However, it should be understood that after an injury the individual may no longer recognise the world in which they once inhabited, things may look the same to them but they may not feel the same, they may feel the same way but have difficulty showing it. They too, have to come to terms with their new reality and sense of self and it too takes a long time. During this time, they need familiarity and structure, but they also need to relearn lost functions so need to be stimulated.

A good way of helping the brain injured person to reestablish themselves and their identity is to go over old ground. They may have had particular interests prior to their injury, in my case I learned to play the piano several years before my accident so in this example, playing again would be a good way of reinforcing old neural circuits and if they were damaged, through repeated action over a long period of time the brain would eventually compensate by working around the damaged area. Some functions may be recovered completely with little discernible change in terms of effort, others may require more of a conscious effort in order to execute which results in added stress and fatigue.

Besides doing pre-learned activities, they need family and friends to support and understand them. This is a delicate matter because when presented with someone who’s brain injury is or isn’t open-knowledge people may feel alienated by someone who behaves differently to what they’re used to such an extent that they may disassociate with them. Whether this is right or wrong, is not for debate, the fact is it can and very often does occur. To illustrate this, the divorce rate among couples is disproportionately high among couples where one spouse has had a brain injury. Lost relationships in the aftermath are akin to lost neural circuits and lost part of our identity. Some relationships are irreplaceable, but for the ones we can replace our ability to do so is hampered if we cannot relearn how they worked in the first place. If you know of someone who had a brain injury, they need you now more than ever as you were once a vital part of their identity and a key to its reestablishment.

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Hi Barny,

I have just read through your post twice and I can identify with so so much of it, I too had a frontal lobe injury brain bleeds on the frontal lobe and my personality has changed but I'm getting there. My wife has been brilliant and so have my kids, accident last May so early early days. Headway have been fantastic too with counciling and with my emotions and identity which were non existent after the accident.

What you say about identity is so true for me as I have a very controlling father and from the age of 16 found it very difficult to find myself as he would often create fear in me so finding my identity was difficult so at 45 to find out who you are is so overwhelming. Alcoholic for 30 years which was great for hiding my feelings and getting rid of reality but sober for just under 3 and had my accident last May. Identity is a funny thing as it can take years to find as we are all searching for it but the older you get the more you find out about yourself and eventually you understand who you are. Just took a little longer for me.

Thank you for your words. Nick

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I'm glad it resonates with you, if it makes someone understand their or their loved ones injury better it's worth me writing these blogs. They're not easy to write, brain injury is such a complex condition, it's as if I'm writing about the meaning of life itself. But I feel I've lived with this condition long enough that it's somewhat predictable and I know what has helped me.

It's still very early days for you, have all the support you can get and address issues early it helps prevent major ones occurring later on. I wish I had known back then what I now know. Denial and lack of self-respect is the enemy of good rehab.

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So true Barney,

Im not having a very good time with my parents as they think throwing money at it with a top London Neuro professor will help and solve me, its just not going to work as there are more issues than just the Bi with me. I will have to speak with them and try to explain my feelings and whats going on. I have found detachment from them the best way to preserve me like protecting a fragile egg as I'm vulnerable around them.

I am finding Headway extremely helpful for me but all they see is its making it worse as I'm detaching more from them. This I need to discuss with them but it won't be easy.

Anyway have a fantastic Thursday.

Nick

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I find that people I'm close to have a harder time accepting my BI and its effects that I do. It's very frustrating when you feel you're doing the right thing in seeking help and coming to terms with the BI and they'd prefer you to just 'get on with it' or that you're somehow 'giving up' and letting the BI 'take over' you.

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Thank you, Barny.

A well-written, well-researched piece, which underlines the fact that there is a good deal of 'nobody knows' in relation to 'recovery' from brain injury. There's a wry smile in here, because I recognise when I'm going into a 'Gage-stage' (Side-thought, wasn't the child in Stephen King's 'Pet Sematary', who 'came back different' called Gage? Maybe not, I might have mis-remembered that.)

My brain injury was a combination of a ruptured aneurysm on my anterior communicating artery, and the associated crush-damage from the well-meaning cerebro-spinal fluid that rushed in to 'wash' the irritating blood off my brain. (Like a well-meaning Grandma, who tries to dust the television while people are watching it...)

I'm not a brain injury expert, I'm not really an expert on anything, but I do work with young people, some of whom have some challenging behaviours, so I strongly identify with the re-learning aspects of your post. I'm roughly 18 months post-injury now, and am still picking up the 'there is a better way of doing this' cues, in response to my brain either getting 'stuck' on something that used to be near-autonomous, or me having an inappropriate emotional response to a stimulus that wouldn't bother an un-injured person.

Hindsight is a wonderful/horrible thing, and I can see that, in the very early days, I regressed to near-toddler type behaviours, seriously, I was all but spitting out food and saying 'bleh!', because everything tasted/smelled 'wrong'. The I-don't-like-this stage was vile, I can look back and laugh now, knowing that it was probably my mind enforcing rest/space to give my brain time to heal, but it was exceptionally frustrating for those around me, having a 38-year-old woman saying "No!" to everything, freaking out in supermarkets, and changing one set of pyjamas for another set of pyjamas, because 'outside' was clattery-noisy-smelly-bright. That's the hard bit, that you're out of hospital, so people expect you to be 'better'.

Once the toddler-phase was petering out, I moved into a sort of second-adolescence, the 'rediscovery' bit, in natural adolescence, there's a theory that higher-functioning develops, but that the brain reverts to 'basic' for a while... (I used to deliver training on some of the more 'difficult' bits of adolescence, and I'd analogised as follows:)

The pre-adolescent is like your old kitchen, you know where everything is, and you know which cupboard has the wonky hinge, but you're so used to it that you just work around it. The post-adolescent is the new, shiny kitchen, where everything works, but you're not quite sure which of the buttons on the extractor-fan are for the light. Adolescence is the in-between, where your utensils are all packed away in various places, you have builders traipsing plaster-dust into your carpet, and asking for cups of tea, and you're trying to cook a meal on a camping stove on that wobbly table you use for wallpapering.

The rediscovery, good grief. OK, I didn't run around kissing boys or girls, but I did end up with yet another tattoo. (We'll file that one under 'reclaiming', I have historical PTSD-traits mingled in with the brain damage.) In epiphany/mid-life-crisis/second adolescence mode, I decided that I didn't want to carry on plodding on, as I had before, and I made some pretty major changes, to things that just weren't working. Outside-eyes on the situation could argue that it was 'the brain damage' that made me ask my husband to leave, but, in reality, it was 20 years of being mostly-unhappy, combined with a catastrophic medical event. (Oh, wait, this is Headway, not Relate...)

I'm rambling now, knowing-when-to-stop is a skill I didn't have 'before', and I'm conscious that I need to work on it.

Thank you again for your post, it's important that the information is 'out there', because there's a whole world of people out there who either recoil in horror, and expect us to eat their shoes when we mention brain injury, or expect us to be 'better', and the same as before.

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I ramble a lot too, I'm scatter-brained now and flip from point to point barely maintaining a common thread, it's definitely could be a frontal lobe issue (well it is in my case), it's as if the guards have left their posts and it's a free-for-all. Good for you, going against the trend in separating, I just hope it was a good decision for you. You can talk about anything in your life as it must in some way connect to your BI, don't worry. Yes, so true on the recoiling in horror, it's just not what people want to hear, but if I don't say it I feel like a fake.

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I tended to go off on tangents 'before' as well, an endless source of amusement for my son 'now', when we're having a conversation that ends up wildly off-topic, and I verbally back-track, just a string of seemingly-random words, to get back to where I was- all well and good when I use the right words, but I've been known to verbally slip when I'm fatigued. My son turns into an imaginary superhero 'Exasperated Sigh Man' quite often. "Mother, people don't have 'back legs'." and "Baywatch potatoes? What the hell are you on about? Do you mean the hedgehog ones?" My guards sometimes leave their posts, wander off to make a sandwich, remember something they need from the shop, and then wonder why they've brought a buttery knife into the bedroom. I had a pivotal moment with the Neuro-psych, when he pointed out that getting angry at myself when I 'forgot' a word wasn't especially productive, and that I should just find 'another' word and hope nobody noticed- brilliant advice, but I've been known to come up with some rather strange alternatives...

I'm generally OK at work, because my brain is 'engaged' all day, but sustaining that level of focus-attention means I'm usually three kinds of useless when I get home- LOTS of meals are 'some stuff with no label on from the freezer', because another one of my 'adaptations' is cooking more than we need on 'good' days, and then freezing it for 'bad' ones. My mind can wander a bit during long meetings (Seriously, I was in one meeting for five hours a couple of months after the original surgery, and had a four-hour one a couple of months ago.) the 'impulsive/blurty' bit of my brain is not allowed out to play at work, there's usually a page at the back of my notepad for 'things NOT to say', and, if a meeting is dragging on, and I have a point I need to make, I'll write it down, and periodically underline it until it's my 'turn' to speak. Life with a brain injury is a long voyage of discovery, and rediscovery, re-training the toddler/teenager into something resembling a functional adult. ('Resembling', because I was sitting in a formal disciplinary meeting yesterday with 'Supergirl' pants on under my suit. WELL DONE, blurt-brain, you just told a stranger about your pants.)

Good days, and bad days, days when my son and I will laugh ourselves breathless, and days where I have to say "Hormonal dip, son, there's a good chance I'm going to randomly burst into tears, just ignore me.", and he'll respond "Would it help if I poked you with a stick/gave you the dog's ball/shrieked at you?", or something equally ridiculous, because he knows how I work. Humour is a big part of it, for me, it always was before, my job is mostly dead-serious crisis management, so a lot of us have that weird gallows-humour about us. I was 'weird' to most people before I acquired my brain damage, so I tend to stick with people who can handle my tangential conversations. Fair chance I'll have to use every iota of 'reserve' I have on Friday, I have a meeting with my new manager, who is one of those dithery "How are YOU? Can I get you a cup of tea? Would you like some cake, and to see a photograph of my living-room curtains?" types, I'm going to have to professionally keep her at arm's length, because she's never going to 'get' me. Some of that's the brain damage, some of it is just that I find her incredibly irritating, but I did 'before', as well.

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Supergirl pants...geez did you have to tell me that?! But since you did, may I ask did you wear them before the BI?

My manager is also like that, the pleasantries are annoying if well-meant, it's their way of keeping you in their little box. Ramble on...

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I've been wearing cartoon/superhero pants under my suit for years, one of my mostly-harmless little quirks. I usually have mismatched cartoon/neon socks on as well, one of my 'tricks' to distract challenging students is to show them my socks (not my pants.) 'Do something unexpected' is a cracking strategy, and, once the kids have seen my socks once, they 'get' the non-verbal cue if I start messing with my trouser-hem, and the ridiculousness tends to diffuse the situation... That was pre-BI as well.

Yes, my manager is a gap-filler, she seems to think that you can't be in the same room as someone without smalltalk. I can, I very much can, I don't go to work to talk about cake and curtains!

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Ok, so that explains the socks and with that I think this conversation's reached it's logical conclusion, I'd really like to be a fly-on-the-wall when you have no choice but to flash them with your batman socks. :)

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Thank you for that - it was fascinating. My identity changed too, although not to the same extent. I had to deliberately change my values to fit my new self, and that was a rather painful process.

Have you read any of Oliver Sacks' books on neurological patients? He discusses the same sort of thing.

Lia

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Glad you liked it! I hope to tackle many other difficult topics. I haven't read his books, but have seen the film starring Robin Williams as Oliver, one of my favourites. I didn't know he tackled the same topic, I'd like to read it, do you know what book it's in?

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I believe it was An Anthropologist on Mars. He mentioned Phineas Gage in it too, and there is a lot of "identity versus illness" musing.

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I've bought it and another one 'Musicophilia' since playing music is one of my neuroplastic-inducing tools I use, I'd be interested in knowing what he has to say.

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Mmm Ill have a look at this Author Night Bird thank you for that.

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