What does the anniversary of your brain injury mean to you?

We know that after brain injury key dates such as the anniversary can be particularly difficult for many people, but similarly for others it's a time to look at the positive achievements and progress made.

We'd like to put together an article exploring this issue, to help understand it further and gain an insight into how things change over time, and the strategies and ideas you use to cope.

As always, thank you for your help.

25 Replies

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  • I note it in my calendar/diary but rarely do much about it, as though it was a life changing event I don't want to be defined solely by it if that makes sense?

    I did though celebrate the 2nd year as I felt I'd made a good recovery and no epilepsy, which had worried me. So I brought in cake at work!

  • Hi Admin,

    To be honest with you I find I don't even think about the anniversary at all now, I did the first year, I was so happy to have survived and thought that the anniversary date would always be a happy day for me for the rest of my life but once I found out the tumour had started growing again the anniversary date was never even remembered, nowadays it's all about the emotions that go with the build up to hospital appointment dates for mri's and then the date for results that's on my mind and whether or not the radiotherapy has worked, etc etc. I can't say that I ever think about the anniversary date. Hopefully somebody else out there will have other feelings that help you with what you want to know. xx

  • We acknowledge it quitely now,the first year (2 years ago) we had a party!

  • The first 5 years after I don't remember much and then all of a sudden it was 10 years after and I realised I had achieved a lot. I had come to terms with the fact my old life had gone and I could see a future- although it has never had any direction or aims associated with it. Another 10 years went by and I now really feel I am dealing with my issues much better than ever and am in control because I have very strong healthy coping mechanisms where at first I had none and then destructive ones. I am okay with being me and that is the first time I can say that and I doubt I will ever 'lose the plot' as I have done a million times before. Probably because of my son- without him, I wouldn't be so sure :)

  • And to add, I really do reflect on the anniversary each year with a candle, maybe a cry or something (alcohol in the past) and now I make a definite effort to do something nice as it's a summer date. Would never forget- it actually sends a chill down my spine and my way of dealing with that is to focus on it as an important time to reflect.

  • i had an accident 54 years ago and have never thought of having had a TBI until my GP a few years ago ( who I serve with on our Patients forum ) decided to give me a proper health check, asked me why I had never attended out patient clinic following my coma in 1963 ; now I worry that everything is TBI related despite getting the all clear by neurology

  • Hi Admin, as every other day I try to just crack on as normal - though friends and acquaintances have mentioned in the past and noticed I'm quite subdued... it is after all the anniversary of both my sisters passing also. I try not to be but subconsciously it's definitely there!

  • I haven't had mine yet.

    For a while I assumed that after 12 months I'd be fully recovered. I am doing well.. but I now know that I probably won't ever be fixed fully.. I am nearing my anniversary. I don't know if I will 'celebrate' as such. I'll probably give my parents a big hug.

  • 12 months to the day of my SAH I was in a different hospital having my gall bladder removed and I wouldn't have thought about the date had my son not said 'It's a year to the day'.

    I know it's 7th of Dec. but it always passes unnoticed for me though my family seem to keep it noted.

    Perhaps it's irrelevant for me as I was unaware of the date when it happened and for some months afterwards.

    My family, however, were acutely tuned in to all times, dates & events as they were the ones who 'lived' it whilst (looking back) I was in a dreamlike state.

  • I know the date, I think about in the run up a bit. I think the day it falls on santa run Sunday again I will fundraise to mark the occasion.

    It sends shivers down my spine, it was such a minor injury that caused such devastating damage and was so close to taking out my respiratory centre. I am only here for a mm or so of brain space.

    Try as I do to not let it, it also brings up hard memories and anger about the failure of primary and emergency care to treat me correctly. There are so many what ifs that could have changed the course of events regarding my injury and subsequent life course that it is very hard not to go down those roads near the time.

    It's almost the time I let myself go there because throughout the rest of the year I try desperately not to and on reflection today I guess I should get some help with it because it's probably classic PTSD. I do remember the whole week, in vomit inducing detail and it's probably time I dealt with that.

    What can you do eh :)

  • One of the symptoms I have, is no relative sense of time or dates, so all though my injury was a few days after my birthday, I tend to overlook it until some time later. Indeed it is in a few days time and had forgotten about it until this post appeared.

    No celebrations , no rituals, no real feelings it is just another day

  • My first anniversary is on 30 January and I'm going to celebrate. It will be a time of quiet reflection for me and a quiet night out with my family when I'm sure we will laugh at the events surrounding my admission to hospital ( how my mother and wife dealt with it and the surrounding panic), the fact that I reliased the identity of my true friends and family and be thankful for my continued recovery and the fantastic work of headway and my local brain injury team. Altogether it will be a happy day and one to appreciate that I am still alive and not disabled unlike others I met on my ward and in subsequent rehab classes and to look forward to continued recovery. For me time has been a great healer. I hope it has been for so many others. Rock on!

  • Thanks to the driver of a brand spanking new Ford Cortina giving it a whirl I was knocked off my motorbike, hit from behind as I was on the crown of the road signalling to turn right

    9th July 2017 will be the fiftieth anniversary of the day that my persona changed irreversably, never to return. I was a respectful, quiet and studious lad and my 17th birthday just two months away. I had achieved good passes at O Level and an apprenticeship lined up with GPO Telephones [now BT]. I had good friends and and a very nice girlfriend.

    On leaving hospital nearly three months later I was a very changed person. Noisy, pushy, foul mouthed, self opinionated with little self respect.

    There was no aftercare whatsoever apart for one quick visit to the surgeon at Atkinson Morely Hospital.

    I started work as expected and found I no longer had the skills I needed. At least I had the O Levels even if the knowledge meant nothing to me.

    Numeracy, decision making, short-term memory problems, stuttering for words, misunderstanding and extreme agression spring to mind. I had somehow acquired a massive libido, my girlfriend left me in two weeks and my friends just faded away. Attempts to contact them usually meant other arrangements, I knocked on a couple of their doors and their mothers looked at me with pity as they said their sons were out whilst the fact their Scooter was in the drive and the Parka hung on the hall coat stand meant he was in.

    I lost my job, couldn't follow the college courses, went onto another, lasted 6 months and so on. In 1968 I had 18 different jobs.

    By 1970 I had started to settled down, 1971 I took a position with a pharmaceutical and I went to college. Very difficult, I did my best and achieved my full professional qualifications in 1977. Although a full [what is full?] recovery was many years away.

    I gradually settled down; married, divorced and married again. Children. 40th Anniversary just passed and for the last 20 years I've occupied a decent post at a University. I estimate my recovery took around 25 years.

    I am not the 'old' me? What he was really like is now lost to me. I control myself adequately but the libidi is still a problem having had celibacy forced upon me thanks to the effect of nature on my wife.

    I'm still epileptic, poor spatial awareness, poor immediate organisational skills, depression. What's worse is my friends .... where are they?

    Incidentally, about 18months after my operation I stopped all medication and the depressions reduced in severity; the frequency of occurance had also lessened.

    So, do I think of the day I changed? Yes and now I'm much older these thoughts appear quite regularly.

    Do I celebrate it? No, for me its as popular as a dose of herpes combined with the unacceptable state of celibacy I find myself in.

  • I was the same 'On leaving hospital nearly three months later I was a very changed person. Noisy, pushy, foul mouthed, self opinionated with little self respect.' Exactly how I was ha! My relationships broke down, my first boyfriend couldn't handle me and his situation deteriorated as he was with me when the car hit me so he went downhill (personality-wise) also. Drink and drugs were massive routes of escapism for us and killed any chance of getting back together. My friendships deteriorated and I trusted no-one.

    I was 17 and had just left school. A drunk driver ran into me, I smashed her windscreen and then went 30ft through the air as high as a ceiling, landing on my head. I remember nothing. When the ventilator was removed after 3 days I became conscious after 8 and I didn't know who people were, was very confused. Thought I had been shot on a beach with my nana who dies in 1992.

    I'm sorry reading your story made me want to write mine. I hope that is ok. Gosh now I am crying, I wanted to write something positive on here this morning about getting a distinction in music theory grade 1, which I taught myself as I knew the basics (recoreder/piano/violin as a child). And then I took the test with a class of well-mannered intelligent 11-13 year olds in 2004 ha ha :)

  • For the first year I had no idea what was wrong.

    Speech therapy neuropsychology occupational therapy and neurophysiotherapy and eventually getting a diagnosis on the 2nd anniversary.

    If you have seen the film "how to train your dragon" the specialist did that thing that the old character did to Hiccup and gestured to all of me saying that having seen my MRI results they were not expecting this.

    I fell apart. The OT put me in touch with counselling and that really marked the beginning of my new life.

    Life has changed. I do have targets but I really don't do deadlines any more.

    Year 3 I posted in the forum and year 4 passed with a pat on the back and examination of unmet targets.

    Progress continues towards those targets.

  • My first major operation on my brain was on April the 9th 1996.

    I was 11, almost 12 when I had it done so I was still trying to get through school.

    Every year that date came up, my parents (mainly my dad) would notify me but I wouldn't think much of it really. And that was how it was for years.

    A friend from my Headway said in 2009 or 10 that because of their BI, they now have a different personality and they have even given this new personality a name! I think she mentioned that she also celebrates a second birthday, kind of like the queen, but I'm not certain on that bit.

    When I joined Health Unlocked and spoke to some of the very friendly people here I got to talking about a second personality and name and I also got to speak to another member about Spongebob Squarepants haha. There is a character feom that show called Eugene and the name kind of stuck. I told my mum about the second personality thing and Eugene and she liked it.

    So my second personalities name is Eugene. Nice to meet you :).

    I don't celebrate April the 9th but I suppose it's more of a rememberance day for me. Kind of like the one minute silence you give for the fallen except mine is more of a few seconds silence of what I had to go through in 96 and 97 and 98 and 99 and 2000 and 2005 and 2006 and 2008 and 2010 and hopefully, touches head (It may be wood but it is from the tree of knowledge :D) I don't have to go through any more operations :).

  • I am stuck and find it impossibly hard to move on with the 'new me'. Anniversarys are even more poignant with making me thinking lots about the life I had before which was in a really good place, having had lots of childhood issues to overcome, so I feel angry/devastated/upset that my life has been thrown back into everyday struggles with a bi me!

  • I thought that the first anniversary last year signalled an 'acceptance' for me, that my life had changed beyond recognition, but I was getting on with it. I'm coming to realise now that it was probably more of the denial that I was different, rather than the acceptance. 2 years next month, and I'm a 'walking, talking living doll', because I won't let other people see the 'sleeping, crying' bits. As far as everyone else is concerned, I'm 'better'. I am better than I was on that day, and on the neuro-critical-ward days that followed, but I'm not all-of-me any more, and, after something of a relapse, I'm struggling with that emotionally.

    I know that no two cases are identical, and that many of us weren't told how difficult life might be, the adaptations we'd have to make, after the pat-on-the-head "You survived!", and off out into the same world, with different brains.

    There we go, not my most positive of posts, but it gives me something to work on, whether that's public awareness-raising, or quiet contemplation of how information about potential difficulties can be shared sensitively, at an appropriate time.

  • I have never seen it as cause to celebrate... but it had such a HUGE impact on our lives that I feel it is important to acknowledge/mark the day and so that is what I do. Just a word or two (written or spoken) acknowledging the day that heralded the start of life part two.

    Added:

    I have now reread the original post and noted that you refer to changes and coping strategies over time...I have kept a digital journal since my TBI ( partly to record the things I cannot retain and partly as an outlet for all the stuff that was in my head that I could not make sense of) and while I don't necessarily use anniversaries to re-evaluate this I do, from time to time, go back and read through my journal entries from earlier in my journey and I can see how things have changed...and how I have adapted some of the coping strategies over time...and how some have become second nature now.

    Early changes were more obvious, but revisiting the journal has been a good way to spot the little changes that I might otherwise have simply overlooked because it feels like nothing much changed after the original obvious recovery period

    2016 was the tenth anniversary and I was shocked to find to has been so long. Life part one seems such a distant thing now... and I see that as more of a positive thing...a sign that I/we have adapted to life part two and are getting on with it...rather than dwelling on what used to be...and it happened without me noticing at all.

  • I don't recall the exact dates.

    I remember in the lead up to Christmas, at some point each year, that many years ago i was having an MRI and sometime in mid Jan I was having an op. But never recall the dates exactly. So don't put coping strategies or anything in place, it does not trigger me at all.

    It's not something that bothers me the anniversary.

    For better or worse, it is something that happened and I came out the other side as another person who looked just like me but seemed to have been the victim of some kind of alien abduction...:)

  • I don't take much notice of the anniversary of my head injury now because I have had two and just feel lucky to be alive.

    My main coping method is listening to people close to me who give me good helpful advice when I am lost an confused. They also help me when I get tired.

    I feel that I do not need to take any notice of the anniversaries because time has moved on so much and I have stopped pushing myself to hard because it will not make things any better but will make matters worse. You need to know you limits work around them and listen to others.

  • Hi everyone,

    I just wanted to say a big thank you for all the responses to this post. It's really interesting to see the different perspectives on what the anniversary of a brain injury means, and it's clear that it's a difficult time for many, but also a time of positive reflection for others.

    We'll use your feedback to put together an article on the issue for our Headway News magazine and website, and it'll be very useful in our work to raise awareness of the reality of adapting to life after brain injury.

    Many thanks again for all your help,

    Andrew

  • The anniversary of the day my life changed can go either way: I could very thankful for surviving such an accident, fighting to be where I am & my young family; OR, I could be in a why me & what if mode. Why did it have to be me that suffered the worst injury; I had the best prospects etc. It depends on what mood I am in, but at some point of the day, I'll no doubt have moments of both points if view.

    At the end of the day though, I'm still here & now, I have others (my own family) to care for!

  • I always celebrate it - not the accident, of course, but the fact that I survived it - I fought my way out of that coma, I pushed till I was ready to come out of hospital, and I fought like mad to be allowed back to work. The Occupational Health doctor there didn't think I should go back to work, but I fought and fought (with the help of my former doctors, at the rehab. unit) until they let me back in (initially for 'a trial period', but that was nearly 10 year ago, now).

    So, on the 20th of July each year:

    * I take the day off work

    * I go into the rehab hospital where I 'woke up' (I have no memory of the first 6 months - the accident was in July, and I 'woke up' at Christmas - I had been conscious for months, but I had no day-to-day memory). I take in a cake. I walk round and give a slice to all the patients, saying "Don't give up!", and all the staff, saying "Thank you so much!"

    * I send a Thank You card to my former psychologist (who works at a different hospital, now).

    * I send a Thank You card to the wonderful lady who found me, lying by the side of my bike, in France, in 2005. I normally write a letter to go with it (in French, so it is brief!), saying what I am up to, and what my children are up to. My youngest was still a baby, back then.

    * I send a (brief!) letter to Dr Bitch saying (sarcastically) 'I am celebrating, so I think you should, too!' I know this is very childish, but, OK, I am childish.

    * That night, I *have* to drink some champagne. However, my husband doesn't like doing that. He says that yes, of course he is really happy I survived, and that it is all over, but...

  • I'm still pondering this, my ten year anniversary is next month.

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