The Front Cover of the Book

On the front cover of the book there is a pretty young woman with a lovely smile.

We open the first page and see the same young woman sat in a wheelchair.

As we turn the pages of the book and read we slowly begin to realise that the young woman has many complexities in her make up.

What we see on the front cover is not what we get as we work our way through the book.

The books title is

Brain Injured

How many of us can identify with this young woman

31 Replies

  • Hi headchild

    This book sounds very interesting and I am keen to get a copy to read. Who is the author please?

  • Strawberry Cream this is hyperthetical

  • I wondered that but wasn't sure! I guess as headchild doesn't have a BI personally, it's her daughter, she didn't realise how this might confuse some of us :o

  • Well I just showed my stupidity to the whole forum!! What an embarrassed dumbo!

  • Not at all Caroline.

    I wasn't sure either, I read it a few times and couldn't decide. I find the subtle abstract things difficult to gauge.

  • Well I didn't even catch on to the possibility as completely took it to be making us aware of a book and even now when I re read it I still see it as suggesting a book. It seems the subtly is beyond me now. Hadn't realized until that post that I have lost that ability to recognize the difference!

  • Oh bless you

    Don't beat yourself up over it :(

    But I do know how hard it is when you discover yet another thing you have lost the ability to do!

  • Thanks hedgehog. Will comfort myself with cuppa coffee and open an Xmas box of chocolates and eat too many!

  • that sounds like a good plan :D

  • ME TOO.

  • If I hadn't been so quick and the first to respond I might have realised I was misunderstand through others responses. But showed myself up big time!!!

  • Now I have explained properly as I should have at first - would you say that many people who are BI have issues which are not immediately apparent?

  • Yes most definately. I think what you wrote is very apt and so true which is why I was so keen to read the book!!!

  • No you didn't, I believed it too and I have not had BI I am a partner. The description was more powerful than books on BI that I have read. Xx

  • Hi meowth

    Thanks for your reassuring words that it doesn't only take a BI person to miscomprehend the post! It was a very powerful and apt description and my instant reaction was - wow a book that will be so very accurately portraying how it is. My brain didn't really engage and think about the post not being what I took it to be! I also have read a few book and although there are bits I can relate too I am yet to find one that really connects to me. x

  • If it is hyperthetical. What a fab idea have you thought about writing a short story capturing this. Your short description was top class and caught my interest right away. So many people look at my hubby and thinks he looks fine he is fixed..... How far from the truth.

  • Thank you meowth, that is what I think it is like for many with B I problems.

  • I can sort of identify what you mean, Headchild. 'Don't judge a book by its cover' is one quote I stand by. It sounds to me like when two people talk to each other through a chatroom on the computer. They both like how each person thinks and says things but they do not tell each other the full story about themselves, they keep that hidden. They agree to meet in person and when they finally see each other for the first time they both say in their heads "Oh" as if they weren't expecting the outcome.

    I used to speak in online chatrooms a lot and I used to be quite honest about myself and tell people my backgound or parts of it whenever I felt comfortable doing so. I did make quite a few friends, from all over the world and I think some of them liked my honesty. As they say 'Honesty is the best policy' :). Some people liked me but seemed a bit strange haha, as long as they weren't doing any harm to me I was OK. Even I would speak to people and create an image in my head of how they might look but then was completely thrown when I saw an image of this person. But even though they may have looked different to what I imagined, that does not make them any different as a person.

  • Are you writing a book or are you trying to make a (rather obscure?) point? I'm afraid this had me a bit confuddled.... Darn BI just gets in the way

  • Cat3 I know my daughter inside out, back to front, anyway upwards, downwards lol

    It's others who struggle with her complexities - I guess that is because many don't know much about B.I

  • I am so sorry folks I had no intentions of trying to confuse people.

    I'm the dumbo strawberryCream - not you!

    It was merely my own reflections ( I should have said that shouldn't I )

    Yes I was thinking of my daughter as 'what you see initially is not what you get'

    In other words my daughter appears to people when they first meet her as a young woman with physical impairments.

    However when you get to know her more you will notice that she has so many other problems caused by her brain tumour.

    I suspect others may be the same???

    Sorry again

  • Thank you for your apology and explanation. Much appreciated that you want to take my 'dumbo' label and stick it on yourself! I now get it and think actually it is a very good ------- (sorry can't come up with the right word!) way of portraying how it is for your daughter. Learning curve you have said time please explain it is a hypothetical description etc.

  • Oh yes, me! I know when people who don't know me talk to me or see me I probably look very normal (?!), uninjured and healthy. And compared to some I am, I am lucky.

    Sometimes I LOVE it that I can mostly hide bits of how I am now (keep it hidden/private) but other times I need people to understand and see/believe me when I try to explain problems I'm having trying t do things and the help I need.

    It happened right from the start: GP believed hospital's and consultant surgeon's lies, saw and heard me through the distorting spex created by them: false info, we often see what we're told to see, believe what those who 'must know' say. But he should have known better, he knew me (a bit) and KNEW I wouldn't make a fuss about nothing and that if I said something HURT bad then it DID, no exaggeration.

    Same more recently: what was the woman at social services TOLD about me that made her ask if I had cut my 2 fingers 'on purpose' = and why did she believe it? Her boss (or other? Who, when, where, how and for what purpose?) told her I was a liar, a nutter, I did things like cut myself to get attention, or what? Still really hurts and not been explained.

    I wonder IF people are told 'oh he/she is schizophrenic' = do they 'see' their idea of a person with that label, what the media (and psychs) say people with that label are like?

    In other words: we all see and believe what we're told to see/want to see and believe and labels can help us (if correct = get correct appropriate help that we need) or destroy us if the wrong one and/or the label doesn't accurately describe the PERSON in all our many facets, generalisations = often damaging.

    But brain injury, we share many similar (but infinitely different) symptoms, no 2 of us are the same but generalising brain injury (label) SHOULD help those with duty to help us do so, a starting point. Getting very scrambled now, too complicated, can't do, sorry. Maybe someone clearer-headed than me can say better?!

  • Hi Muddled,

    I think that questions relating to self harm will be standard and part of Social Services job.Their role is to make sure you stay safe-they will have seen others who have hurt themselves in a cry for help or as a way of punishing themselves in the past -they don't know you so have to assess you. It can seem very personal and hurtful when this happens but they have to ask so they can get a picture of how you are.

    I had a bad experience surrounding my illness and was also sent to psychology without all the relevant tests having been done.In spite of physical evidence to the contrary I was eventually put down as FND.I know what it feels like to have been unfairly labelled.

    Still,whats in a name?Yea I was angry at first that I had not been given the best chance of a proper diagnosis but after reading about many others who had similar experiences I now know how common this is in the medical world .You will never get anyone to admit mistakes/that guidelines have not been followed as you are one person against a massive medical institution.They will all stand together and safeguard themselves against blame.

    So I took my anger and my bad/hurtful experience and put them in a bottom drawer in my mind.They are there if I want to pull them out and examine them from time to time but not now at the forefront of my thoughts.This freed my mind up so I could work on my recovery.

    I decided that the most important person in all this was me-not a label or others opinions of me..So I have treated my recovery as a learning curve-discovering the problems I have been left with and trying to find ways round them that make life easier and better for me.

    I can't undo the past but I am certainly in charge of my future.I consider myself very lucky that I have not been affected emotionally like some.More physical/cognitive glitches with me.I feel these are far easier to deal with.Everyone is affected differently .

    I really hope you can rise above the label you were given and file your bad experience away.Accept what help you can get-even if only psychotherapy.Anything is worth a try and you never know-you might just learn a few new tricks that help you to cope better with your condition.

    Take care,Angela x

  • Oh Angela/angelite, what a lovely thoughtful reply, thanks so much for taking the time.

    Not safe (and very unwell) here in my home and social services don't care, nobody does. Try to help myself, on good days I'm tiny bit proud of silly 'easy' things I do like making food, getting the washing done at laundrette, washing up (very hard work for me and get shaky) and forcing myself to go out and talk to people = this a.m. found another art course and talked - but knackering for me. AND paid electricity bill on phone. Sounds stupid but (think) nobody knows how hard trying do all this stuff is. Each thing 'small' but SO many to do and that's before time/energy for FUN things. All the 'work' has to come first (mostly) and not much left of me for other things.

    But even psychology dumped me - AFTER they'd interrogated me, tested me and said 'yes, you need help' coz anxiety and depression very high and I said 'yes, life not worth living' (and had told her why and what I needed to change that) = dumped. I felt so alone,blank and empty, after ALL that.

    I try to bury my hurt too. Opened up once at mental health here, in pieces and SO crying upset but then just left alone to deal with it. Very wrong. And then fell to bits before xmas and to hospital and then DUMPED after. So need help support of RIGHT kind but can't get it. Why? And yes, I DO try to help myself best I can but some things just CAN'T do, makes me feel a failure, rubbish. Shouldn't have to feel like that,not my fault but they make me feel like it is.

    You're right: I've been SHOWN the problems I'm left with and it shocked me. My sudden outbursts of anger and the weird physical aggression I showed once = SO shocking to me, was always a pacifist, NEVER physically aggressive and STILL waiting to be told what the mental health nurse said that made me react as I did = I NEED to know so I can learn. Dunno why they refuse to tell me, cruel. I SO try to control my emotions but they're all over the place, cried reading about Vietnam and Agent Orange last eve = how people are STILL suffering, I get SO upset by things like that, the cruelty and injustice, it overwhelms me.

    Seeing a psych but she only helps me decide which jobs I CAN take on, mostly. I never get to try get help deal with the past and having my life and relationships (ESPECIALLY with my son, I SO miss how we were) in tatters, all broken. Don't know if EVER can be repaired/rebuilt. I try so hard but not good enough. Trying to get back into art but terrified coz so much in my head, try block it out and when chinks open = too much and overload and meltdown again.

    HATE where I'm living: filthy, chaos,mess, doesn't ft me, can't find anything, living out of boxes = nightmare. But can't find better, overloaded with jobs can't do/don't want (and shouldn't have to) and fear my needs too complex, scared I'll always live in bad places = make me feel worse. Try to just put up wit everything, HATE complaining, too exhausted to write letters everyone tells me I must = too big, can write bits here coz small, can cope wit that but go into breakdown with anything complex (and that hurts) like housing/here.

    Tried to learn tricks to adapt/cope with how I am from start and was proud of how hard I worked. But now = so much undone, worse, hurts, after all my hard work and NO help. Memory worse and I don't seem to be learning anything,maybe I am but forget? All chaos and jumble in my brain, seen SO MANY people and so muddled. SO stressed out: appointment too early Thursday and stress: try write bits and it's too hard, muddle, can't see/forget what trying to do. Will I get lost? Went before so knew route but can't remember properly now. Lots traffics/busy, will I be late/frazzled, not be able to talk properly (happens) and will I cry and then feel failure/stupid? SO stressed. And I don't even know IF they'll help me, after all that, going. Feels like I keep going to appointments but FAIL and people who say they'll ring me after = continue/follow-up = don't, SICK of it. Why do they lie/make false promises? Hurts SO bad. They must KNOW that.

    So worn out trying describe how I am. Yes I now know better how I am and yes it hurts but need HELP with dealing with how I am, things I do wrong,can't learn (forget) and HELP to progress, recover. All SO hard and feels like I'm doing it myself, trying,but not getting anywhere = NOT improving,going backwards. What am I doing wrong and why is nobody helping? Art is nice but so little energy now, weighed down by other stuff. Dump it, try to do fun things, can't, need all the BADICS sorted and even then I know my life'll be tricky,not easy but I work so hard (invisible to others) just trying to do all the basics, eat right, sleep, washing, pay bills.

    And get SO low and occasionally suicidal (eye=opener, shocking) when overtired and overloaded and STILL not getting anywhere to try get what I need. Fail.

    You know, I think. Thanks.

  • You should be very proud of the tasks you manage,no matter how small-I can see how much effort this takes from you.Are you able to have some of your bills paid by direct debit ?-I find this much easier.

    I feel your art is important-even if you become overstimulated after and need to take something to relax.Being able to express yourself through art is a great freedom and interacting with others can raise our spirits.Perhaps you can prepare for your art groups on certain days-have a meal ready to heat up for when you come back or leave a cold snack in the fridge.Fill the kettle and put your tea/coffee ready in cup.Sounds daft but can be a blessing when you arrive home tired !

    I used to enjoy art and writing poetry a lot when I was young until life got too busy but still have an occasional meddle !I don't think it ever leaves you.Are you a sketcher or a painter?

    I have not 'buried' my past experience but rather put it away in an unlocked drawer-I am free to visit anytime I choose.I just prefer not to carry that ' file ' under my arm all the time-too heavy and weighing me down.

    Best of luck with your appointment.Try not to overthink things-just go,be yourself,explain about the overstimulation, memory, multitasking and fatigue problems just as you have on here .Let's see what happens.x

  • Angelite, thanks. Have been in mega stress about this (YET ANOTHER) appointment, in muddle from trying to think = can't but brain won't shut up. Did the route again today coz in stress about that. Today NO parking places there except for one disabled one = I'm not allowed - and YES I know, I'm so lucky I can walk and move. But parking is STRESS for me, it'd be impossible (?) to go by bus: I'd be exhausted and hurting SO bad if tried but many people must have to = WRONG.

    And art, yes! Went to arty shop and bought bits (SO expensive, people on benefits just CAN'T buy) and I have so many ideas in my head = caused a blockage = too many, all scrambling for the exit (from brain) and makes such a jam none get out. Was never like this before, so sad. Trouble is too many choices, decisions = infinite. Just have to start...but here (excuse?) NOT right. But in place was living 2011-12 DID do art. Will I ever get to place in my head (and living place, home, that fits me) where can?

    Sick of writing all the time and drowning in words, being told to write or it doesn't count/wasn't said/didn't happen, feeling I must coz can usually write better than talk - but others in denial about this coz I often sound fine,my godfather on phone last eve said (again, he has before) 'there's NOTHING wrong with your brain' = nice in one way I sounded OK but when NEED people to understand it hurts. And denial from him HURTS,like he doesn't believe me, I'm a liar even to HIM?

    I try to be myself, trouble is the me I am varies, can't ever rely on myself for anything and I behave so different depending on so many things, awful for me and others. Which 'me' will they take as the snapshot that time on that day (and thereby label me) and will that mean they exclude all the other facets of me, the MEs that go up to make ME?

    You write so well, so calmly, and you helped me big-time, thank you very much.

  • Angelite: you wrote 'Their role is to make sure you stay safe-they will have seen others who have hurt themselves in a cry for help or as a way of punishing themselves in the past -they don't know you so have to assess you.'

    But the same woman who asked that (but hasn't asked, none of them have (why?), the most IMPORTANT questions) was really weird to me in Council too: I had hellp and she turned away with a flounce, wouldn't look at me or speak to me, it really hurt. So no, I don't accept that reason (excuse) for her (and their) behaviour. And SICK of people telling me it's how I 'take it' or 'imagine' things like people wanting to hurt me. My (? a) penknife wrecked/damaged by those who took it off me in hospital = I said it was a gift, take care of it, = they KNEW precious to me and damage like that CANNOT happen by accident! Therefore done on purpose. Purpose? To hurt me? If not WHAT/WHY, by whom, when etc. ?

    Had to take TWO sleep tabs last night, first (oddly) did NOTHING, was still WIDE awake and fretting after an hour and getting cross and upset. Then 3 alarms to wake me (normally do 2 but afraid wouldn't work, I sometimes set it to p.m. by mistake), was fast asleep and not slept enough to get up for meeting. And she got me to sign something, DID read this time but it didn't say very much but then she printed things out SUPPOSED to be update/what 'we discussed' = but we DIDN'T and way out of date/I was wrong, deluded what I can/can't do (varies SO much) - ish. WHAT'S THE POINT? And errors in that she printed. Yes, she made me cry.

    Then she sent me BACK to where been twice already but DUMPED. Woman there (council, social services, I think?) said she'd ring me to get me there for an appointment to get help with all the papers, forms and stuff, but she hasn't. Felt dumped and DELAY DELAY, making me ill/more ill. So copied the papers and took them there today. Dunno if she WAS on phone to who she said (woman I saw) but felt odd. And yes, apparently I WILL receive a phone call 'within a week' (when I pushed/asked) for this appointment BUT people (social workers and mental health) KEEP saying (promise) they'll do things, they'll ring me, but then DON'T. No wonder I've lost confidence in them, they LIE, they DON'T follow-up or HELP me, why? That's their job = I'm told.

    Way too tired, cried as got home, SO sick of this. My life in tatters. More stupid post,MORE jobs can't do, if I could have I WOULD have, need help oh but none there. On and on. HATE my life coz HATE people treating me with NO respect/understanding, they KNOW it makes me feel worse than do/need to. WHY people WANT to hurt me, more?

    Sorry, nowhere to turn. Poor Headway helpline, I keep ringing them but they NOT HERE and all HERE dump me. Seeing psych tomorrow, she helps me by telling me (is she right?) the few things CAN manage to do. But need help housing BIG-TIME, terrifies me, in complete scramble, blocked now coz tried and failed too many times and it's too HUGE for me. Not my fault but am made to feel like it is. Need someone here who can go through all of it with me (housing) and help me write, exhausted from typing/thinking and OVERLOAD, FAILED. Makes me hate myself and go so low again, scared. Got suicidal last time when pushed myself (others pushing me but not helping as NEED) too far, overload. SO scared of getting like that again but BLOCKED housing. "YOU find solutions' people say, if I could have I WOULD have. Not my fault, Round and round.

    Worked SO hard trying write CV and my disabilities today for appointment and printed2 copies (one for them) but not taken = pointless, waste of my time/energy and was SO hard.

  • Hi Muddled,

    Your post seems very stressed tonight-I can see that the appointment has upset you and tired you out.Sorry it did not go as well as you had hoped.

    You wrote that the social workers never ask the IMPORTANT questions.Perhaps you could explain to me what the important questions are?

    I am glad the psychologist you see tomorrow helps you decide which tasks you feel you can manage ,perhaps you could discuss what happened at today's appointment with her?

    Regarding housing-do you feel the area where you live is frightening/unsafe or more just noisy/unsuitable?

    Never feel like a failure,I can see how hard you work.Hope you get a good sleep and feel a little better in the morning.Angela x

  • P.S. angelite: no: when I'm THAT tired all I can do is SLEEP. Can't eat, MUST SLEEP. No choice the 2 times after art. When can (and there's time) I do make food before go out (I sometimes forget) but (had said this to friend while ago): no, not eat even soup when that tired, too hard work, must sleep FIRST.

  • No worries,if you can't eat before sleep-you said you were feeling cold/low blood sugar so thought food first might help. x

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