Woman on the Edge ... looking at my life and being misjudged

Life sucks sometimes!

I have a little card from Headway that says I am the survivor of a brain injury etc. when I showed that to some 'friends' of 'friends' when out to explain the reply was cool and great I want one so I can swear and get away with it. So cruel and so not funny and so prejudiced but then they were told it was real and not a joke .... they were left stunned and trying to find the words to apologise.

I just dont understand life around me some days and it is like a black cloak of depression just wraps itself round my shoulders and wont let me see the sunshine.

In my simple world there is a rainbow and somedays it is bright colours against a blue sky and other days the sky is dark and stormy but the rainbow is still bright. Some times my rainbow is pale, some days there are two, some times there is just a small part of my rainbow visible in an unexpected way. On bad days there is no rainbow. Mostly I look out and see my sunny funny rainbow somewhere and smile at it and I wish I had a bucket of rainbow paint so others could see my world.

Sorry for waffle but today someone has smudged my rainbow colours a bit to a shade of murky yuk.

My actions and words have led someone who should know better to judge me instantly and decide I am offensive! at that I cried. I went to see them as I was upset by another who when I said I am sorry I cannot recall your name and another person present told me her name ... she retorted oh dont bother telling her she wont remember! as a result of that woman's prejudice and bigotted comments which showed her ignorance I got told that my actions and words are deliberately offensive!!!!! and that is after I had explained several times to the group that I have a trauma acquired brain injury and apologised when I first met them 8 weeks ago that sometimes my actions may seem inappropriate but it is how I see things! To be told that I should know better and life is not all black and white!!!! Which words in the phrase "part of my brain is not working properly" did she not listen to? and student support for disabled students with learning difficulties .... that is the biggest joke/insult of all.

18 Replies

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  • Thanks Little Blue, it is brilliant knowing I am not the only one.

    The explanation thing ... i got so angry recently I took the magazine someone was reading and ripped it to bits and threw it in the air. I looked at them and eventually said (my stammer was bad as it is when I get angry) "See that... all the information is in there, it is still there, it is not stupid, it may not make sense to you but if you take time you can put it together and it will be 'fine' and nothing a roll of tape cannot put right! They dont made tape for a busted brain!!!!!

    One bloke got it and explained it to the rest ... he also got me a large gin!

    I get the kindness thing too and yes few and far between; but why?

    When I showed my little card to customer complaints in BHS they got their customer service manager instantly and she took me for coffee in the cafe as I had been distressed; she had a relative with ABI so 'understood what I was going through'. I wrote to their head office and thanked them for the support shown. But rare indeed.

  • human nature im afraid unless you have been through it nobody ever realy understands .. the word is ignorant and sometimes people dont know how to react when they are confronted with the unknown try to laugh things off , sometimes ya got to roll with the punches or it ends up screwing yourself up ... sometimes just step out of a converstation and look it another way .. it does eat you up if you let it ... most people who get involved with charity organisations or raise money for charity only seldom do if they know someone or has been afected by an illness or disability .. like i said human nature !! try no to let it get the better of you . ive been there!

  • no problem ... littleblue glad to put my input in if i can .. has your doctor referred you to a phycologist or anything like , sorry if i sound patronising, i dont mean to and i dont really know your history but here to lend an ear .. no problem

  • hi i had one of those cards but people just said well you could have found it so with a little help fro photo shop i have added my photo and now they just read it and leave me alone, the card is being taken up by headways head office and they are going to have them made for every one that is an attender at any of the headway centers

  • The card has been helpful, for us. My husband shows it as soon as he gets into a meeting or as soon as we are seen to in the bank etc.. and we find people very responsive to it. They seem to take the time to explain and re explain things. However I find if a situation is already blowing up before the card is shown then the other party tend not 'believe' the card is real. It is so ignorant of these people, just because they dont understand brain injury doesnt mean it doesnt exsist!

  • your husand is lucky

  • Reading this I feel so lucky. I live in a small place and almost everyone knows me. They always help me on and off the bus with my bags and any other things I need. Mind you having said that we do get a lot of tourists in the summer and they often stare (I have bells palsy from my brain op) and are less understanding. But still I count myself very lucky to live here where people are so understanding.

  • your words are so true, I did though find it funny at a headway meeting, when someone was stuttering and a chap who normally stutters called out 'come on spit it out'. It can be good if we laugh at each other, because that is laughter of support. Like you I am fed up with people close to me telling me off for repeating myself, or forgetting, it feels as though I am being treated like a naughty child. With regard to your friend s laughing at your card, try joking back as I do and say 'you too can have a card, all you need to do is survive a 6 1/2 hour brain tumour operation raidiation treatment, and your in our club'. Truth is people make silly jokes because they do not know what to say or how to respond....some maybe mean it, but most do not. Congratulations for coming so far, your a winner

  • I agree with you in that I have found that because I look ok, people think I am faking it when my walking or memory leaves me. I found so much inspiration from the para olympics it has made me try harder

  • little blue, i cant play scabble as i cant understand it any more the letters dont make sense, I used to be good at it. I have never liked playing cards.

    As for having a hidden brain injury I got mine falling off a step ladder.... trust me as a health and safety advisor it was career suicide! and always amusies the staff in any hospital I go to. I found out that it was due to a broken neck pinching nerves that caused my fall so I now have a cage inside my neck so constant pain as well. All of which is 'hidden'. . . you are not alone.

    Active interests... I go to race circuits and chase fast cars dressed in an orange boiler suit as a marshal.... nuts? i guess i must be to run towards a car on fire... so i suppose that is where my hidden brain injury helps.

    I have a good neurophsychologist in fact he is great :-)

    you can pm me if you want to chat

  • I am a university lecturer. Thankfully, I was able to go back to that job, and I cope fine with giving my lectures. I haven't forgotten any geology, luckily. But I can't remember the students names! They come up to me in the corridor, and say "About that assignment...", and I have to say "*Which* assignment? Which module are you on?", and I have to call them "You, there, the boy in the blue...". Brain injury *does* this to us, and people who don't appreciate that when you tell them are idiots. They are at fault, not you!

  • That's fascinating to read...I'm a primary school teacher who always reckoned I could name the kids in my class by the end of the first day....not any more! Since my TBI I mix up children, forget their names, forget what I'm saying. But I'm so glad to be able to continue to teach. Enjoy your lecturing!

  • Interesting thread. I do not have a card, in fact this is the first time I have heard of one. It me thinki that on one hand I now want one as it may make my life easier, especially when i'm getting stressed out. but on the other hand I do not want one as I have spent my whole life not wanting to be treated differently. People should treat you the same with or without injury so I think I would feel really uncomfortable and like a lesser human being if someone treated me differently when they found out I had an injury via a card.

    (maybe its just another hurdle i have to learn to get over??....)

    ps: its very reassuring to know I'm not the only one who can kick off when there is no real need for it! Doh!

  • i have to say ignore the ignorant and let them be who they are smug self satisfied and ignorant waht it takes to survie a brain injury do not give up go on in the knowleged that we are the tough ones whose lives change beyond a normal persons recognition the avergae person is most understanding as with racists the ignorant are evil and the world would e a better place without them my tactic is to avoid like the plAGUE BRAIN OVER BRAWN EVERYTIME NEIL

  • I have a card, shown it once, I have difficulty with numbers - particularly change. I bought an ornament I took a fancy to in a Charity shop; it was 75p.

    I tried to give the correct money and when I handed it over I said, 'Please check.' The woman looked at the money and said, 'That's not difficult, is it?' Well, I saw red and instead of vaulting the counter and headbutting her I offered the card and said, 'Please read that.'

    Immediately, 'Oh you poor thing; it must be terrible not knowing what you're at......'

    Really browned me off for the day that did. The strange thing is that I've never had that anywhere else in 45 years of TBI.

  • Can anyone please advise how I can obtain one of these cards?

    Many thanks.

  • Hi CuriousConnie,

    If you contact our helpline they will send you out a card. The telephone number for the helpline is 0808 800 22 44 or you can email them at helpline@headway.org.uk.

    Best wishes

    Headway

  • I love your rainbow analogy! Totally understand where you're coming from. It's easy to say that what other people say doesn't matter, but it does.

    How long since your step-ladder TBI? It sounds like it's relatively recent (and when I say that, I mean within the last 6/7 years). You're clearly trying v hard to retain your sense of humour, good on you for that because sometimes there's little else to keep you going.

    If I'm right about the time scale, please believe that things DO get better, despite what some people think/say. I think I finally felt like 'me' (and actually knew what 'me' was!) about 8 years after my TBI (it was in 2000). And I've continued to improve & feel better, although more slowly, since.

    I read your post as it was titled 'woman on the edge' - accurate description of how I felt many times, on the edge and about to fall off, unable to cope any more with day-to-day stuff or with the loss of 'friends' who found my behaviour amusing. These people are no longer in my life and I am left with real friends who love me as I am and don't like to quote amusing things that I did immediately post-TBI.

    Wishing you loads of luck with recovery x

    p.s. can see what you mean about the card, but still wish I'd had one!

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