High IQ Brain Injury Book

I've just been inspired to start writing a book. "Normal Is Irrelevant: The High IQ Brain Injury Book". On reading this article and its follow-ups and comments, I noticed so many parallels with experiences I thought were mine alone.

dancingupsidedown.com/the-h...

There are special issues with high-IQ TBI people. We present a fairly competent facade, so our problems aren't believed. Our brains used to be sources of pleasure - we miss that even more than the average person. We find it extra humiliating to suddenly be "stupid" because we always saw ourselves as a breed apart. We're pushy and argumentative about our symptoms, so they write us off as hypochondriac. And finally, once we've convinced someone to give us cognitive tests, we get average or above average results despite the fact our mental state is an absolute mess!

It seems obvious that someone needs to write a book on what happens when a high-IQ person gets a brain injury. An Amazon search has found nothing, so I'm going to take up the challenge. I would love some feedback from this community. Is a book needed? Which issues do I need to deal with? I want to include some anecdotes from individuals, to make it clear that this is a widespread issue and not simply mine.

It'll take a while to get the book together, since I'm working on a memoir right now. So this thread is simply for pointers and interest. :)

Lia

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  • Hi, this is a difficult one, as a Mensa member I have always been proud of my high IQ. I remember coming out of my coma and hearing my son remonstrating with the professionals because of their disbelief although he assured them of my IQ level.

    But I have found that as I have progressed through recovery, the fact I can talk and reason with those professionals at the level I can, I get a lot of respect and they don't talk down to me.

    I am lucky that my intellect appears to be untouched I am just a lot slower at processing. My number processing is affected too, and for someone with Maths and Further Maths at A level that proves difficult sometimes, but I can laugh at the mistakes I make now, and fully understand why some people just cannot do mathematics.

    I was able to put my own rehabilitation in place regarding my fine motor skills( although still not good enough) and I still work daily on many things. I am still able to complete 16x16 sudoku, but not at first.

    So, maybe there is a need for a book, I would have thought that those of us with the ability recognise what we need are able to help ourselves. It is however good to know there are others out there experiencing the same problems and a push in the right direction never hurts.

    Good luck Janet x

  • It's strange. Now I'm in neuro-opthalmology, my ability to reason is respected. But in psychology, it wasn't. I picked holes in their logic and it was seen as me being difficult and negative.

    I have the same thing as you: Maths at A level, B grade, but now I can barely count change in shops. My brain goes "what are numbers?".

    You're right about our being able to help ourselves. But I was written off because my cognitive results were "too good". I have the cognitive profile of someone with ADD or Asperger's, but for years all they gave me was useless talk therapy for a non-existent mood disorder. I'm pretty sure cognitive rehabilitation will help me, now I know it exists.

    Thank you for the support :)

    Lia

  • A doc at the National Neuro actually told us that it would have been easier had I been less intelligent to begin with and a friend with a BI was told a similar thing too. It seems the changes are harder for us to accept, possibly because we are not accustomed to simply accepting things because we are told they are so... and going away to lead a simple happy life was never part of our agenda.

    For me this whole thing was totally devastating. I had lived with chronic medical conditions for years and was accustomed to my body betraying me, but I always consoled myself that I had my razor sharp mind and it was that which earned my money and my place in the world.

    My lovely husband still says that even with a BI I am still the smartest person he has ever known and I love him for that...even though I know I am not the super shiny bright spark I once was ;)

    I enjoyed the article in the link, I could identify with most of what she wrote and it made me smile in several places.

    Is there a need for a book? I'm not sure to be honest, but I doubt it would hurt or be a waste of time to try it out.

  • Absolutely. My plan was to be a research scientist in microbiology or biotech. When I see developments in those fields (which have come along brilliantly in the last ten years), I am excited for the future but saddened that I can't be part of it.

    My fiance says the same thing as your husband :D

    The book is definitely happening now. I'm in a post-concussive community on Facebook, and I posted a similar message to a barrage of "That's me!" responses :)

    Lia

  • HI,

    It is an interesting subject one that is very close to home. I too used to have a top 1% mensa score although refused to join. I say used to because I was just cutting timber and despite have a degrees in Maths and an Msc, I couldn't accurately subtract 28 from 110 !

    What I am about to say may come across as insulting to some, for which I apologise in advance! Several months post injury, once the pain and headaches eased, I started to do more and then I realised that I couldn't do things like I used to. I could no longer do complex mental arithmetic, write articulate sentences or even converse eloquently - I thought %&*@ so this is what it is like to be normal or average. Almost like Superman being hit by Kryptonite!.

    Someone once likened it to the difference between a dumper truck and a race car - If the dumper truck starts running out of tune or developes a fault and can't quite drive in a straight line, it doesn't matter because it just plods along. A race car, is used to running at high speed and being agile - something slightly out of kilter is a disaster!

    One of the things I have found as well is that the Neuro Psych assessments don't work for high achievers or high intelligence. The first point of failure is that high achievers see the test as a challenge and engage all their mental capacity to solve the test. So great can be the mental exertion that once the test is finished, it can take me two days to recover from an hours worth of testing. The second issue with the tests, is that people with High IQ / problem solving skills see the test differently. E.g. if I am given a maze and asked to find which of the three routes leads to the centre - I start at the centre and work out. Yet something simple like the Alpha Numeric trail finding, I can go wrong on!

    The problem is that most of us post injury are classified as "high functioning". However, there is a huge difference between what the medical person sees and what the BI survivor "feels" This is compounded by employment, whilst a high performer will have had a high status role pre-injury now their skills have diminished they cannot do their previous work, what role can they do which will provide some satisfaction or sense of achievement ? I have struggled with this for several years.

    More than happy to contribute to your work, send me a PM if you want more information.

    S

  • Your input would be extremely valuable. I'm taking submissions of stories as "case studies" to lia@freeyourwords.com at the moment, but the actual work won't be done until next year. (I have a memoir to release before then). I'll also be needing some beta readers. In case you don't know what those are, they're people who read your book before release and offer criticism and suggestions. You'd be welcome to help, though I'm too broke to offer anyone any cash. (In the unlikely incident that the book becomes wildly successful, this would change :D )

    Lia

  • Plenty of case information which I would be more than happy to share with you.

    No problem with reviewing the text, amongst the many things I "used" to do was a journalist and technical author, so reading and providing "suggestions" for text is second nature.

    I have sent you a PM with my email and mobile.

  • lia did you post something similar to this before?

    there was a woman who listened to a radio programme,as a result of that, came to the conclusion, because she she had a masters degree in geology, i think it was, her brain would repair quicker than a half wits

  • It wasn't me! I suspect a high-IQ brain repairs more quickly than a lower one, but I'm not certain. Obviously it's not the only factor in recovery anyway. Practice, age and time since injury are also important.

  • lia i get really frustrated trying to think of something i know and for the life of me cant remember. then ill find myself in a really weird situation and it will come to me.

  • Hi Liz

    Really interesting.

    I tested at Mensa levels as a child and was a bit rebellious and didn't want to know or go to a grammar school.

    Never been assessed since until neuropsychology.

    I did feel disappointed to only be at the upper end of normal for my age. Apart from one aspect of the damage showing up the other significant result was that my level of awareness was just sub Mensa.

    As others have said it may be this that allows us to do our own rehab to a large extent.

    I had a love of mental arithmetic and lateral thinking puzzles for fun.

    But don't get me started on counting change!!!! Aargh! Solution to that one is don't.

    One day a week I get x amount of money out, do the shopping and when I get home and after I've rested I add all the spending together and subtract from the amount I got out. Then compare that to the actual change.

    Good luck with the book and if I can help just pm.

    Love n hugs

    Xoxo

  • Yeah, they wanted me to join a gifted and talented scheme as a small child but my mum didn't want me to develop a big head. I already had one, to be honest. And I *loved* mental arithmetic and those logic puzzles in grids.

    I really appreciate your support. :)

  • Lia,

    I'm not going to claim to be massively intelligent, (A-levels ABBBN, then no university, because the head of sixth form had told me I was likely to fail, and not to bother with UCAS...not everyone has to look AT the teacher to absorb the material, and I always submitted coursework at the absolute last deadline, I was a coaster.) but, on my second (and final) session with the neuro-psych, he did mention that more-intelligent people had different issues during adaptation to changes. My skewed-slant on that was that it would be very easy for someone else to just declare "I can't do that, I have a brain injury", then spend the rest of their lives sitting on the sofa, watching television. I can't and won't do that, part of that is my essential nature to challenge, and part is my work. I work in Safeguarding in a secondary school, constant risk-mapping and re-routing, which is what my damaged brain does, too.

    On an intellectual level, I'm hiding a grin at all of the 'numbers' references in the thread, my intelligence, if you want to use Gardner's theory of multiple intelligences, never sat in the linear-numerical sections, always more linguistic-analytical. Numbers will not 'sit' in my head, and the PIP "Subtract 7p from..." just made me irritable, because NOTHING costs 7p.

    Baseline-functionality, I can do that, but not reliably, I described it to the neuro-psych as having 'lost the ability to simple'. I can write massively intricate reports on current and historical complicating factors in families, for Child Protection Case Conferences, and there will be no area of potential risk unexplored, but I regularly get out of the bath with the soap still on my face, or the conditioner still in my hair. Like your classic ADHD child, if my mind isn't fully occupied, it wanders, high-end, crisis-management I can do blindfolded, and standing on one leg, but 'dead-space' where my mind isn't fully engaged is borderline-dangerous, one of these days it will be a Kitchen Devil knife I find down the side of my armchair, or in a basket of folded laundry, not a teaspoon.

    My inherent tenacity, and desire to prove myself masks my difficulties to others, and that's where 'the systems' fail us, in my personal opinion. I'm hyper-vigilant about people 'finding out' that I have a brain injury, and the potential that someone is going to decide that means I'm not-safe-for-work, I take things that other people see as 'being kind' as a personal insult, and I'm even more socially withdrawn than I was before the BI.

    Adaptation, because I'm used to drawing up care plans for adolescents facing various difficulties, and because some of my brain-changes are amusingly teenage-boy-like, it all falls neatly into place, but, by all the Gods, it's tiring. I know I'm exhausting myself, and I know that constantly running at the high-end of my processing range is the reason I'm exhausted at the weekends, but the alternative is taking the 'easy' cases at work, and, if my brain isn't engaged, it wanders.

    I'm no genius, but I do agree that 'our' challenges are different, I accepted very soon after my SAH that my brain was now 'different', due to having been crushed, and then rummaged-about-in, and having metal wires fired in to seal the ruptured aneurysm, then more a year later to correct an incidental aneurysm. What 'was' is gone, and I'm re-building on what 'is'. (No epiphany there, that was always my way.) If nothing else, a book on brain injuries in higher-ability individuals might be useful for our employers, because mine don't have a clue what to do with me, and are being unintentionally offensive to me with their 'kindness'.

  • i panicked when i left school joined the airforce and found id forgotten to take my slide rule and tables book with me !!!

  • "You won't have a calculator everywhere you go..."

  • Nor spellcheck ! In 'real' life, away from the computer when I find I have to write something I realise just how much I miss the spellcheck as I flounder ! : ))

  • My marks at A-level were similar: ABBBC. I wasn't a super-genius. But I was bright enough to see my mind as a playground, and it made me so frustrated and angry when nobody understood the loss of that. I've created workarounds (notes, mnemonics etc) but people don't understand the difference between compensation and cure. I'm still angling for the latter.

    "Amusingly teenage boy-like" is interesting. To put it bluntly, I've always had a bit of a dirty mind, and the free-associative component of brain injury throws some rather fun words into play. Luckily I have the self-control to keep them to myself apart from the odd smirk at times.

    It's quite fascinating how this bears similarities to ADD and Asperger's, isn't it?

  • Absolutely, I work with adolescents with additional needs, so I'm used to triaging for likely 'symptoms'. I had a touch of PTSD 'before', so the hyper-vigilance is just exacerbated now, as are the twitchy 'unable to settle' issues. In my experience, if you look long enough at anyone, you'll find traits consistent with ASD, but I recognise that my planning-around would probably trigger that, too, not so much the fixed-routine element, but the rigidity IS there. I could Connor's-rate myself, and come out with ADHD quite easily, or run the triad impairment diagnostic, and tick enough boxes to be ASD, but I know that some of it is just 'me'. I'm an awkward creature, always have been, BUT the previous intelligence is still there. That's why it's so hard to find myself 'stuck' on non-events, on things that used to be autonomous before the brain injury.

    Hey-ho, we keep on keeping on, because the alternative would be sitting on the sofa in our underpants, eating chocolate, and watching soap operas, and for some of us, that's not life.

  • I think you've just answered a lot for me - my husband has a lot of similarities since his accident. I must show him your post, thank you.

  • Brilliant news fir me; I scored so well above average in my assessment I returned to work, managed to carry on for a few weeks but eventually had to share how incredibly strange life was for me. Having to attempt to recognise where I was; remember all ones work colleges, non of my disabilities were visable. Unless I inform people, which I have very recently started to do, nothing suggests I am have a disability. Thsnk you for reassurance, I am not totally alone.

  • You're not alone. I posted this message in a few Facebook groups and got an overwhelming level of response. I'm starting my own group - you can join if you want.

    Lia

  • All I can say is thank goodness mensa does actually measure intelligence by math I have read articles that having a above average I Q or even being well educated those who suffered BI recovered much greater' I was invited to join mensa when I was 16 despite not doing very well in school I declined I have since retaken one my horrid 1/2 brother sent me he thought he was being clever pardon the pun this was 3 weeks after I got out of icu and my memory was resetting every 2min still beat him so intelligence is not affected by memory of sorts or how long I can read or memorise, how tired or clumsy I am I did start a law degree but in he end I could not cope with the 4 hour written exam the brain shuts down, by year 3 I had managed to pass some I did however pass all the assignments with a fairly decent score oh how I dremp of multiple choice I would hace aced it xxx

  • Ment to say does not measure with math 7 year still can't operate a phone duh xxx

  • Just read the article, Lia - an interesting concept.I suppose it makes sense that a higher level of 'intelligence' to begin with before BI means that a few points lost would take you down to average, rather than below average on tests. Perhaps then, it could be said that higher intelligence is an advantage.Yet it seems much more complicated than that. So many factors in BI - location, severity, age, physical ability to reroute, access to therapy, even personal attitude are factors in recovery. The article also suggests that higher IQ could also be a curse, in that abilities previously taken for granted are suddenly lost and can be more difficult to come to terms with - again I feel that attitude plays a major part in acceptance, often with a long period of 'working through' many stages : grief, anger, depression etc through to adaptation and more realistic goals. A tendency towards perfectionism can sometimes get in the way of this.

    I've never considered myself particularly gifted but did have a natural interest in English,Biology and Art at school so did quite well at these, probably because they held my attention. Maths was always my 'pants' subject - still is ( Logarithms - what was that all about ? ! ? ) but I can scrape by on simple addition, subtraction etc which is all I need to function in daily life and there's always that fab tool the calculator for back up ! I still love language and science, still like learning new things but struggle to retain the knowledge - memory. Whereas I used to be able to write a word and instinctively know it was spelled correctly, now I have a punch up almighty with Spellcheck,altering letters multiple times and eventually looking it up after several fails ! It does not matter - spellcheck is another great tool at my disposal, in the same way that my stick supports my physical deficits : ) Even if I did not bother to correct all my spelling mistakes on here, I'm sure you would all still get the gist of what I was saying.I have not attempted to draw anything since BI - I seem to have completely lost interest in that side of creativity yet I am aware that I use my garden as a canvas for design. I still know what looks 'pretty' to my eye : )

    I would prefer to see a more inclusive book,that incorporates the high IQ issues but is not solely about a specific group. I feel that brain injury is the common ground we share, regardless of abilities pre or post : we have all lost something, we are all striving to regain as much as we can, adapt to remaining difficulties and come to terms with our unexpected situations. x

  • Interesting thoughts. The way I see it, generalised brain injury books already exist as a resource. I also don't think I'm up to the challenge of writing one; the subject is far too broad. But there's a real need for specialist advice for those who inhabit the intersection of "high IQ" and "brain injury". I don't think there's any harm in tailoring a book to a niche audience, rather than writing yet another all-inclusive one. I do respect your perspective, though. You may be reassured to learn that I'll be defining high IQ quite broadly (say, 120 and above) and I won't try to cultivate any sort of elitist mindset.

    Lia

  • I don't have as high an IQ as some here, but I do totally get what you're saying. I was studying at uni when my TBI happened and now my ability to remember what I have studied has plummeted. So much for being top of the class! And yes, because I tested "average", they decided I wouldn't have any problems. I miss being able to rattle off information or facts at the drop of a hat. Being able to remember a text on one reading. Throwing a paper together so easily. I mourn my brain. So yes, that is definitely a book I would read.

  • Were your cognitive tests broken down into modules? The telling point for me is that my verbal IQ is now estimated at 148, but my performance IQ is 114. (At least when the tests were done seven years ago). They're supposed to be almost identical. A 34-point difference is huge. But it was all brushed off because the mean average was high.

    Lia

  • Yes, For most of it I tested in the top 5%, but for verbal memory I tested average. Which seems okay on the surface, but oh my god! I can't remember anything said to me! To be totally arrogant and quote Dr Who, "Funny little thing, the human brain, how do you get about in them?"

  • That's a beautiful quote and I'd love to include it in my book! I was using post-apocalyptic metaphors to describe my brain after it happened. Burnt-out city bathing in a radiation storm, that sort of thing.

    Angelite had a similar criticism above. The thing is, there are already plenty of books for the general post-brain injury readership. But there's nothing specifically for the high-IQ brain injury readership, and we have different issues from the rest (though they do overlap). I feel more qualified to write a specialist book than a broad-spectrum one anyway. The latter would involve more research to avoid saying the same things other authors are already saying.

    I will ponder how not to put people off :)

    Lia

  • The bit about knocking down NYC?

  • Reading through the responses has tweaked my odd 'interpersonal' response, I did some research on books about brain injury on Amazon, and the majority of the small selection available were 'scholarly' textbook-type tomes. It appears that, unless you're a noted celebrity, or can have a celebrity write your foreword, Amazon aren't going to push your work; that makes me wonder why I spent hours tapping out the 200+ pages on my 'other' laptop over the summer. (I know exactly why I did it, my 'high functioning' brain can't stand to be still.)

    Management at work have seized on my relatively recent separation as a 'loss', and are not-so-subtly trying to suggest that I need counselling for that, but, when I faced a life-altering medical issue, they had no clue whatsoever how to respond. That, for me, is where the awareness needs to be raised, that some of us don't have visible scars, and appear relatively 'normal', but every day is a constant barrage of adaptations just to maintain that.

    Ah, well, there's my alarm to get up for work, roughly an hour after I did get up, and have another crack at remembering what I've run out of, for the online grocery shopping, because going INTO a supermarket is too much of an assault on all of my senses. I don't imagine that the 'normal' types at work have to stick their receipt to the side of the fridge to remind them what needs using first, or have another bit of paper below that, to write what's running low. I don't suppose they forget to wash the conditioner out of their hair in the bath, or have a mini-tantrum at having to get back into the bath with carpet-fluff on their feet to rinse it. I'd assume that none of them sit on the edge of the bed wondering what to do with the other sock, and then 'forget' how to plait hair. (There's a crane-fly in the upstairs landing light-shade, and it's making a noise similar to a helicopter, that I can hear from the living room.)

    Yes, the disparity between high-functioning and average is an issue, but so are all of the other adaptations that all of us have to make every single day, we're square pegs, and the world wants us to fit into round holes, chipping away at us, instead of making the holes bigger.

    Absolutely no point at all to that response, but that's me all over.

  • I appreciate everybody's responses, including the critical ones. I'll take care that the book doesn't seem elitist or scare away those who would benefit from it! For those who are interested, I've started a Facebook group for discussions on the subject. It has a silly name at the moment so it isn't overrun with casual browsers who like the idea of being "smart" but don't really add much to the conversation.

    facebook.com/groups/NormalI...

  • All you needed to say, both in your above post and on the description on your facebook page, was that that it was a closed group, by invitation only for those with a genuine interest. I found your descriptions of the 'types' of browsers you would wish to avoid unnecessary. : (

  • They were inspired by comments from people in other groups who expressed things much more critically. I'm doing a balancing act here. But I shall revisit the description at some point and see if it needs tweaking.

    :)

  • We can't control what others say but we can choose our own words.

    'Be a leader, not a follower' . x

  • I think I may have responded to your question via a Facebook page but I thought I'd give an interim update. I had a neuropsychology assessment last week. I don't have a copy of the final report yet, but basically he said that I'm average or above in the tests. The thing is, I feel slower and thinking feels harder. I was completely knackered by the end and slept for the whole afternoon. I have a bachelors degree in engineering, am chartered and also managed to get a masters degree - although it's in architecture so was easier than my BEng ;) I work in one of the top engineering firms and so am surrounded by high fliers. I'm on lighter duties at the moment. I think the biggest impact is on my self-esteem/mental health but as the test results were above average, I won't be getting any help.

  • That's a massive part of it, Lizum, that WE notice the lag, the gap, but, because we appear functional, we're patted on the head, and released into the wild with "You're doing really well, considering."

    Nobody else notices the slight lag in me, as I double-triple-quadruple process what I'm about to say or do, in case it's socially unacceptable, or in some way unsafe. It's the trite 'running to stand still' analogy, that our new lives are immeasurably more difficult than our old ones, but, because we keep showing up, with our trousers on, we're deemed 'functional.'

    Yes, we 'can still...', but it's harder, and, because we mostly have no visible impairments, there's no recognition of how exhausting going the long way around everything is. Being able to talk openly about that on here helps, the rest of the world (Careful, now, that sounds tinfoil-hat paranoid.) seems to think that "You're lucky to have survived!" is a compliment, or in some way reassuring. It's not, because we know we've come back 'different'.

  • I acquired mine when I was only 12, therefore I've no idea what my IQ was! But I was fairly bright at school, top of the class etc... after once I returned to school I really struggled retaining new information- yet all I'd learnt pre-accident I could recall! I did manage to still get 7 GCSE's but not my earlier plan of 9/10 (as per standard at my school - I was only looked on as a failure by most of the teachers it felt.) and obviously to go onto university etc had been scuppered. I'm happy to help anyways I can to down this concept of expectancies and astonishment from others who knew you before, or hear you have a BI and presume... Katy :-)

  • If you're able to send me your story, that would help. As long or as short as you want. I'm still writing my memoir, so this book won't happen until next year. So there's plenty of time. :)

    The reason I'm collecting stories is to show that the problem is widespread. It's not just my own weird mentality and bad luck.

    Lia

  • Thank you for getting it out there;

    Having been a research fellow, lecturer and teacher of Psychology my memory assessment after brain damaging viral encephalitis, all seemed fine.

    But most of my past life doesn't exist, .I now find it easier to remember positive people and events. Locations are very difficult to visually remember, so all in all I'm not who I previously was. I could go on and on, let me know if you want more. Cheers

  • I'd love to hear your story. The book won't be written for another year (I have to finish my memoir first). I'm collecting anecdotes to illustrate the fact that the same story is playing itself out in many lives.

    And yes, I exist in the moment. The past is incredibly hard for me to picture.

    Lia

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