What's it Like to Have a Brain Injury?

I've come to be scared of the common greeting phrase "how are you?". Often the answer will be something not very positive which is never what anyone wants when asking that question. And I don't want to ask it of people incase they ask it back which makes me much less polite that I ought to be.

The other day one of my friends asked a different question "What's it Like to Have a Brain Injury?" which was not something that anyone had asked in a year of having it. It struck as an interesting question. My answer (the first thing I could think of) was that it was like aging 40 years instantly. What's yours?

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  • Like your answer. Recently i've been saying something along the lines of.

    "You know those things that make you tired, frustrated and you struggle with- shopping, phone calls, multitasking... It's the same for me but more so"

  • When I faced the same questions about my well being whilst in recovery I usually stated, 'You don't really need to know.' If they push it they get the answer, now I just say 'Allright thanks.' [ Happy in my misery :) ]

    Concerning the last question that was asked of me only once and my answer, which I'll use again, was, 'I really can't remember.' Caused a laugh at least and given the gravity of what we could answer that's not too bad.

  • my default answer is 'i'm fine' for the how are you questions

    but what's it like to have a brain injury, i have never been asked that

    and i dont think i can even explain, i can explain my symptoms but the overall question

    so i may steal your 'ageing 40 years instantly' quote

  • Everytime my parent speak to my husband(daily) they always start the conversation with a very patronizing "How are you?" like you would speak to a five year old! He responds back "I'm fine and how are you(?" again like a five year old!!!It drives us both insane and i feel like shouting " How would you feel , he had a ******* brain injury, cant work,,has mobility problems and finanacial problems to say the least........" Perhaps my husband is an optimist but he only feels he as aged 20 years!

  • When someone asks "How are you?" they rarely actually want to know the answer... and a simple "fine thanks" or even a "don't ask"( best said with a smile) is all that is socially required.

    If someone asked "what is like to have a brain injury?" (and that has never happened to me yet) I might be tempted to ask them what they imagine it is like.

    I have been asked specifics about my injury and in particular about what it is like to have no short term memory...I usually tell people that it is complicated and that there are lots of unexpected factors. If they are interested they ask specifics that I try to answer, if they are simply being polite it ends there.

    I have learned to smile politely (through gritted teeth and stifled screams of frustration) at the people who say things like "oh I know exactly how that is/how you feel because only last week I went upstairs and couldn't remember what I went up there for..." Yeah right.,... that is exactly the same thing (not!)

  • ohh the well everyone forgets stuff comments really do piss me off, i would like them to live one day as i do and then try and trivialise it

  • It used to wind me up too, how many people have had a visitor at home for most of a day and when that person phones in the same evening you have no idea that they have been there, they have no idea of the confusion or fear it makes you feel.

    How about making a brew and being reduced to tears because you just cant think how or what to do?

    Maybe they have been in a shower and realise when they look whats in thier hand that they have no idea if they have used the shampoo or if they need to use it, having no memory of picking up the bottle.

    Yes it used to really annoy me, now i just smile and nod, i might ask them if they ever called the police because your car has been stolen, only to find out you were driving your hubbys car that day? How many times have you paid for someone elses petrol because you see one thing and say another?

    I can look back at the diaries and laugh now at the silly things i have done, but the fear in those pages jumps up and smacks you. So glad im not there now and grateful for my recovery.

  • i am with you,just not recovered or able to laugh yet.would you blog some of your diary?the bits you can?am so interested in peoples stories that lead to positive outcomes..lol

  • I get asked this question regularly at work. When I do explain that I am not yet ok, the popular answer seems to be "well you must be moving forward, even if slowly". My Boss seems to feel compelled to "TELL ME" that I am feeling better, not that he knows since he seems incapable of understanding TBI. On one occasion he told me that I must be starting to feel better by now!!

    These days I tend to just reply "OK thanks".

  • Its the only thing u can say isnt it (im ok) otherwise saying how u really feel is to hard for u to put into words and i dont think there is any words anyway u can say that could say how u really feel. a head injury for me anyway is like being born again and when u have been coping with it a few years it makes u feel confused and empty and it makes u feel thats such a stupid question to ask

  • confused and empty,most powerful words i have seen on this sight,they resonate in my very darkest moments..i trully feel what u are saying here..and thank you..sometimes sharing the down,gives another perspective x

  • NO, u ALL KNOW THE OLD SAYING "I WISH I WAS 0 AGAIN"

    IT'S STARTING FROM AGE 0 AGAIN, with a brain injury.

    But the HUGE KICK IN THE ASS IS, HAVING ALL UR OLD MEMORIES STILL!!!

    All I can say, is to turn it into a JOKE!!!

    LIKE I LEARNED TO PEE IN THE TOILET!!!

    Just think of RANDOM CRAP!!! For a answer, it's WAY BETTER TO SMILE ABOUT IT!!!

  • "It's life Jim, but not as we know it!"

    I have tried using lots of different analogies over the years, but this one liner can usually help to steer the conversation elsewhere.

  • Love it...brilliant! Thank you

  • lol

  • I find it hard to answer when people tell me how well I look and i " must be so pleased to be back to normal" , which I'm not. I have got round this by blogging about my feelings and sharing that with work colleagues and friends, that way they know a bit more than I'd feel comofortable telling them face to face and maybe they are a little more understanding because of it.

    I compared in my last musings that it's like rebooting a computer that's got corrupted.

    If anyone's interested they can read it at popgoestifty.blogspot.com

  • How am i? well fine and dandy or cant complain, usually suits most people.

    Whats it like to have a brain injury? Like someone took you from your day today and took your memories and how to do stuff and stuck it in a fast spin in the washer, some of it came out pristine, some of it needed a bit of ironing out, some of it needed running repairs, a lot of stuff just got junked. My kids say its like having a puberty teenager in full hormone rush, mood swings, tantrums, tears, laughter and i love yous all wrapped up in a ordinary looking mum. I have a bad habit of pulling faces like small kids do, usually whilst making an unkind remark when people annoy me, that is when others see the abi.

    We use 'normal' as others may use weird... It does help to have an in joke.

    oh and i can sleep like a teen too ;-)

  • in response to how are you? I reply 'i'm alive or i'm here neither of which are helpful but they are honest. whats it like living with a brain injury ' i say its just the same only much different.I always was a commedienne but now i forget more jokes than enough,though it is with laughter and being silly that helps the days go by. keep smiling

  • Whenever I am asked how I am, I usually reply that I'm okay but I could be better, but sometimes I will even say, when I am feeling particularly bad, 'I'm not dead'. My boyfriend doesn't even ask me anymore because he knows I absolutely hate answering that question. I am at a stage where I am not going to lie about how I feel about my current situation just for the sake of politeness.

    Regarding living with a brain injury, that's a really good way of putting it. My psychologist summed it up similarly, she said that what happened to me meant that I had basically gone through an accelerated ageing process; exactly what happens to most people slowly as they age, but in my case it had happened too fast and too soon.

    I am not as bad as I was but it is still blatantly obvious I am not how I should be. I often forget what I am talking about mid-conversation, or I will phone someone up and forget why I was actually calling them. I haven't read a book, magazine or newspaper in its entirety in over a year. My concentration and memory are crap, I can't really remember much about anything that has happened since my accident and I have no recollection at all of the months before or the first couple of months after. I lose my temper easily and I get very emotional at times. I want to sleep all the time. Yesterday I even forgot how to spell 'roll'.

    I do think that the head injury has changed me, I don't feel like I am the same person I was before. I feel like a part of me died, and I suppose probably it did literally when my brain was damaged.

  • It is the little things, at least you remembered that it was yesterday you forgot how to spell something and the word was roll.

  • Ooh, you sound like you have a lot of the same memory problems I have - I am missing a year and a bit before my accident (which included moving house, a second pregnancy, the birth of a wonderful little baby girl, and her first 8 months!), and 5 or 6 months afterwards. Thankfully, my day-to-day memory is back to normal, now (although I always worry about it! But it seems to be fine). Also thankfully, I love my 8-year-old to pieces, even though I can't remember her being a tiny baby.

  • too be blunt,it is sh*t.....sorry but it is!

  • Stole the words right out my mouth there! Don't be sorry everyone else is being honest! I hate my head injury and how it's made me a person I hate.

  • i tell peps its my trouble and not theres

    peps dont understand so why bother to tell them something that has no words

  • I say to people, you want the truth or the answer you are expecting, and then laugh, if they then push, tell them its awful, your in pain, walking anywhere takes ages, crossing a road is like playing chicken, falls leave you bruised ect....

  • I think people laugh cause their nervous :p

  • I am always conscious of the brain injury - I think that I was unlucky to get it, but I'm really lucky to have recovered as well as I have done.

    I got my TBI in 2005, when I fell off my bike in France. I spent weeks in a coma, months in hospital, and 18 months off work. I still have bad balance, I speak with a weird slur, and I am officially 'blind' (although I'd call it 'partially sighted').

    I *think* I am still seeing improvements. I might be imagining it, but I am always hopeful, and always trying. For so long, I couldn't use my right side at all. Now, I always carry cups of tea with the right hand, just because I am proud that now I *can* (and I figure I need more practice!). I am always *trying* to improve. I refuse to use bannisters. I walk down the middle of the stairs, on the wide stairs at the station, even though it needs a lot of concentration. Everyone else walks faster, but I am still proud, that I can do it. "Yes, I'm sorry I'm so slow walking down these stairs, but I am 'blind' and disabled, so I think I'm doing well!"

  • A brain injury (for me) is like being born again with the memories of 16 years (cause i was 16 when i had my brain injury)

  • My Answer being to that is al get back to you on that one because its so hard a ? to answer just that sometimes or ad say most of the time av qaucking headaches and sometimes when i wake in the morning a dont know where i am or what my name is but al no be the only one whe experiences that!>

  • my brother in law had an accident 30 + years ago.and yep he does really well,but he constantly gets on me nips.with his never ending ,deeply probing inane questions.you would have thought he of all people would get it.but once it was getting over the top and i simply asked " d'you know whats wrong with being an abi survivor? he shook his head n shrugged his shoulders no what? other non disabled non brain injury people.he was left gobsmacked.but i am not gunna spend my precious time on ignorami.or if they ask i tell them to google it.lame i know but like us all i get really exasperated.life is way too short cos odds are they still wont get it yeah? ta 4 all the smiley funny ones today .really cheered me up.

  • It's different for everybody with a TBI, but ...

    Imagine you're in the army. You have a fortnight-long intensive field exercise in which there's lot of running about carrying heavy loads and getting very little sleep as you're planning and briefing when you're not actually doing. On return to barracks, there's all the cleaning and clearing away to organize and carry out, exercise debriefs to attend and fill out, then several "winding down" pints at the bar before hoping to stumble to bed and crash out. At which point, the colonel button-holes you and gives you a couple of priority problems to sort. When, 48 hrs later they're sorted, the colonel says the General's wife is giving an interesting talk on azaleas in an hour's time and you're attending on behalf of the regiment. You grab a quick bite to eat, a pint to wash it down with, shower, shave, dress and dash.

    OK so far? Now imagine you're an hour into the (exceedingly dull) talk, lights dimmed as a few photos are projected, feeling nice and warm and having great difficulty preventing your eyelids interfering with your vision as sleep beckons enticingly. But at the back of your mind, you just know you've got to keep awake and think of an intelligent question ...

    Well, that's what a brain injury is like. On a good day.

  • Nothing near as bad as yours. What's it like? Like being drunk without a drink and I have an idea that someone has stolen the past, but the worst bit is somehow they have stolen my dreams of a future.

  • I have no idea. I can't remember what I was like before I got mine. I think tho it like looking in a mirror and expecting to see someone else.

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