I am new to this service but not new to brain injuries as I am now approaching 22 years following a fall which resulted in a severe brain injury for me. Directly following the fall I went through what I imagine are very similar motions to many of you. A period of my life which I frankly do not have the right words to describe as I do not believe they exist. However since these bad days I have gradually got better, gained a university degree and had a series of pretty poorly paid jobs. My life is pretty normal in some ways and yet pretty non descriptive in others, as both socially and vocationally I appear to have just drifted for the past 22 years.
I would not say that I am unhappy with my life but since 1999 I have constantly felt like something is missing from me. That's about as accurately as I can describe it, part of me disappeared and despite trying very hard I have been unable to find this missing part and furthermore I am not entirely sure which part of me is missing in the first place. Clearly I do not go around telling people about this as I am trying, but failing anyway to be honest, to reconnect with normal society.
Like many of you I have some stories about being passed around like an unwanted parcel by medical staff in the UK and other stories of useful meetings with clinical psychologists which benefitted my recovery. However it is a misnomer to use the word recovery for me as I still carry the burden of many problems and still have bad days where I am adept at screwing things up for myself quite unwittingly. Due to this amazing skill I have come to the realisation that recovery only goes so far for me and no matter how hard I try I will have to live with this until the end.
So how long is a piece of string then? The answer to that question in my case is simple, it is endless as is my recovery process following a severe brain injury. Somethings have got better and almost recovered, some things have pretended on occasion to have got better but then broke again to keep me on my toes and somethings have refused to even try and get better. I guess that is the main reason why I am writing this in the first place, to check that other post brain injured people have also come to the same or a similar conclusion?
I have to say that despite my seemingly drifting like contribution to both my work and social life I am still happy. I have two wonderful daughters and a wonderful wife who make me happy every day. Ultimately I just wish I could find the end of the piece of string and return to normal, get a better job, and ensure a better future for my family.
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Pedal2
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Interesting that you know something is missing but don't know what it is. If you know it's missing then the missing bit is emotional. If you feel it's missing then it's something conceptual.
Think if you are a person that - 'judges, is impatient, not willing to have fresh eyes, don't trust your feelings or thoughts, continuously strives on, can't accept your situation, or are not willing to move on.'
Think of these as individual things, be really honest about it and get back with the answers.
Hello Pedal, I'm glad you have a wonderful family around you.
I think for me, I have to accept that my life is different now, but it can still be a good life - but one that revolves more around family relationships, and not around a career anymore.
Yes, the coming to terms thing is a bit of a work in progress, but my mum's going through her own health scare at the moment, and I'm awfully glad to not be working through this. I suppose seeing that we have value just as we are as human beings, and not as money-making machines is important?
Hi, welcome to the forum From my experience with my brain injury I can relate to a lot of what you say, I think for me the so called recovery journey has got no end to it, yes things do improve over time but we are not the same people we were pre injury and there is a lot of my former self that has now gone forever and although I have no answers for you because we all have our own individual BI, but for me a major point since my TBI was when I could finally accept that things had changed in me forever, I think it depends on what we expect to discover at the end of a piece of string.
I suppose it does depend on what I or we do expect to find at the end of a piece of string yes twice. Thank you for acknowledging that you too have experienced similar losses. It is quite a while since I spoke to fellow survivors and I am very grateful for the support.
Hi Pedal, I think you have summed up the problem accurately. There is a missing bit. I think that bit is the old self.
I'm new compared to you, only ten years. I think people that knew me before, would be better at identifying the missing bit, but it is a bit like chasing the pot of gold at the end of the rainbow. You can never catch it.
You have a successful life, wife and children. Ok everyone wants to be more stable, have more money, but again, to use your question, how long is a piece of string? What ever you earn you can be a bit better off.
I remember when I first started work thinking, if I could earn £100 per week, I'd be laughing. My pension is far more than that £100, and I could still do with a tad more. The goal post is ever moving. I have become a bit of a master of scrapping every bit of money, ppi, council tax etc. The lottery is my only hope.
Recognise your success, learn from your mistakes, and concentrate on being happy.
Thank you very much pairofboots for your response. The pot of gold at the end of the rainbow is a metaphor I must keep in mind for the next time, and there will be one, that I try and find this elusive missing part of myself.😁
Hi Pedal2, fellow Survivor. Great Post, thanks for sharing. Very much like my story except that I 'beat' you because my accident was Jan 1998 ;-). I still mourn 'pre-accident Phil'. I too feel that I have floated since my accident. I just can't seem to get a grip on life although I am happily married to a lady I met many years after my accident. I often find myself thinking, as if it was only yesterday, about the job that I had at the time of my accident. Best job I ever had. I was working as a Carer for people with various physical &/or learning disabilities. The pay was crap but I loved it. I wonder how the clients are, and my colleagues. I've come to realise that a part of me is forever trapped in 'pre-accident Phil time'. Also I often STILL feel that i can do stuff that I used to do and am repeatedly reminded that I can't. The undamaged part of my brain doesn't seem to be able to realise that other parts are broken. Infuriating. It's good to be able to share with others who understand.Keep battling.
I can easily identify with everything you have said SillyPhil as the same has and strangely continues to happen to me. I miss a job which in all honesty I wasn't aware I liked so much pre-accident as I seem to like post injury. Good explanation re your brain being unable to accept that parts of the entire system no longer work as well or at all too. My brain also seems to be in conflict with itself on occasion. Anyway, thank you for the message.
I don't want to minimise your feeling of missing something, but I feel your assessment of your life is unfair: you say you have a nondescript, drifting-like existence but that you have two wonderful daughters and a wonderful wife. Surely to have achieved that, and to be happy, is worth far more than just having a successful career. How many people can say they have what you have, and are happy? You're obviously contributing to their happiness as well, which is worth far more than having a better job, and you're ensuring a good future for your family by being there and giving of yourself - something money can't buy.
If only more of us had a nondescript, happy existence - the world might be a better place!
(By the way, as Phil says he beats you by one year, I beat you by 20 - mine was 42 years ago.)
I’m 32, and weeks off 5 years since my near fatal accident/TBI, and I can relate to so much you’ve said there Pedal2, and the other responses in this post. I healed incredibly well considering my injury and was so lucky to be back in work within 8 months . I’ve managed to achieve so much in the last 5 years including being more qualified than ever, my 2nd wonderful child, purchased and completely renovated my 1st home, amongst other things that I guess define ‘normal’ in our life and society, the things we hope the achieve I guess. But all these things seem to come at great cost, emotionally at least. I’ve had a couple of breakdowns, done some shameful things in the process (not purposely at the time) all in the name of ‘cracking on towards being normal’ or ‘papering the cracks’ and genuinely trying to get ‘better’. I just don’t think I was ever prepared for the possibilities that can come down the line, and I’ve tried so hard to keep growing and learning mentally so I can’t be mad at myself for that, it’s just when I fail I seem to fail so terribly. The part about there being something missing really strikes with me, I have so many things to be greatful for....which I am, completely. But that doesn’t ever seem to answer that part of what’s missing and I feel that also leaves me trying to constantly figure out WHAT, which doesn’t seem to help my journey at times. I thought at 5years down the like I’d be ‘better’. But what I’m coming to realise is that I was ‘better’ when my body, and head, originally healed, and it’s now more a case of coping/managed/learning and having to constantly revisit the drawing board. I miss feeling content in life, I don’t want for much, but to hold that feeling again would be enough. Thank you for sharing your story, it’s reassuring to know I’m not alone in my battles and I wish you all the best in yours
Hello BrownEdgeBoy and thank you very much for your comments and worry not the ability to not only fail but fail terribly is definitely something I have direct experience of. Strangely I have to add that failure often comes out of the blue for me, after a long period where everything is going along swimmingly . Perhaps is it triggered by my own complacency. I don't know if this sounds familiar to you but I have to approach each day kind of like it's almost a military operation, and I am not, nor have I ever been in the military. But then sometimes I relax too much and try and take everything in my stride and this is where things I think fall apart quite magnificently. However as you say, we both need to battle on regardless and at least we know that the battle we are fighting is pretty similar if not completely identical.
The mention of failure coming ‘out of the blue’, is again something I have direct experience of. I do feel that I’m able to grow, and learn about what things I need to have in place to keep me ‘on a level’, and I can do these things happily and as part of my routines, only for time to pass and BOOM, out of nowhere I find myself in difficult situations, with a whole lot of mess made. Other times I can notice myself heading towards these situations in a more week to week way, all the while trying to battle back whenever these strong/difficult emotions or feelings may be, then eventually I guess I almost burn myself out from all the effort to remain peaceful/content/happy, only to finally give in and then hit a bottom. Then the cycle beings once again I guess. I’m not sure which I find more difficult, as failing out of the blue comes with a real shock and hit to take, but a slow build up with much effort made to counter difficulties I think hurts more in a way because of the failure even after all the efforts I try to make. I agree with your suggestion of complacency, but at the same time I can’t help but feel like the head injury takes the wheel and goes off where he wants without any real warning. Yet again, I find similarities in your ‘military approach’ I’ve lived it, and only recently I feel like I’m looking at things a little differently: Ive put too much pressure on myself to maintain all the ‘good things’ the ‘routines’ the ‘balance’, that in doing so, I’ve noticed more and more that actually I’m not just allowing life to be. I know enough about what I need to do, the help that’s available, and if some days I’m just not quite up for all the ‘effort’ then it is ok to just drop the pace, or to just give myself that little bit of extra kindness. I can still maintain ‘effort’ or ‘structure’, but it’s ok if it’s not the most rigid system in the world. This is a slight switch to my recent approaches, and one that’s giving me a new sense of confidence for moving forward. I hope my words can resonate back to you, just as much as yours did with me.
Yes BrownEdgeBoy, your words definitely resonate with me. Allow me to disclose a little further about my background to you to see if this seems familiar to you or not. After my accident I had a hard time, like many people do, but then time went on and I gradually got a little better and returned to work. Whilst at work I started going to Headway meetings and then went on to help set up a Headway in my home town where at the time one did not exist. By that time I had already served 3 or 4 years since the accident and my life prior to the accident had disappeared completely. I had accepted redundancy from a job I had previously been good at but could no longer do and still feel I could not do now. My whole life had been swept under the carpet but I thought ok, I will go to university. I had suffered from aphasia immediately following my fall and had been temporarily illiterate for about 6 months, probably a year but ignoring that minor problem I signed up for an English degree and was accepted. Once I started university I cut my strings with Headway and concentrated on my studies and convinced myself that I would iron out these residual problems myself over time. I also parted ways with my clinical psychologist who had been very helpful because I felt certain I could do all the rest of the work myself. The end of this tale is probably pretty predictable as clearly now over 16 or 17 years since I started university I am now suddenly writing on a headway forum site. The reason for this is quite obvious, I did not or have not ironed out my residual problems and now feel I need to connect again with people who have had similar experiences and know what I am talking about. I feel better now since I started making comments on this forum despite the fact that I am not expecting a miracle cure, I accepted long ago that such a thing does not exist, but talking to others has placed me a more comfortable position now. As defeatist as it may appear to me, I am not strong enough to deal with this thing alone anymore, if indeed I ever was, and need sometimes to share my problems with people who understand whilst also trying to help those I think I can help too. During my recovery I had progress and then pull backs where I found myself in exactly the same position or in some cases a worst position the next day - such is the nature of the beast (one of many terms I have for my brain injury). However, following the recovery you discover that you still have pull backs, they just aren't as obvious anymore. But then after time you start realising that the residual problems require the same work every day to control and therefore they are not going anywhere and after a while you realise you haven't dealt with the residual problems at all, they are still there, same as before. It is then that you or I in this case need to tell someone else about it to check you aren't losing your mind and also to just get it off your chest.
You seem to be able to look at your situation in a very honest way, which I believe has to be a big plus, in that you're certainly attempting to remain true to yourself and the difficulties you face. Having faced similar challenges myself, albeit only currently at the front end of the journey, I find similar ways of looking at things yo yourself. I've pushed on a lot over the last 5 years, and only now am I truly realizing the reality of 'what is' in many ways. I've tried so many things in order to 'regain control' but I'm slowly coming to realize that I need to reframe how I look at these things, and its more a matter of learning to live with, and have the things in place to cope with my issues. I too took the approach of 'I can do this myself' which in some ways I still believe I have a fighting chance of doing (In some ways we have no choice other than to rely on ourselves here), but in reply to your 'defeatist' comment, I am coming to realize that I just simply can't do everything on my own, at least by NOT speaking more and sharing my feelings, as in the end, it the 'bottling up' of my feelings which help lead me quickest to my downfalls. But I'm trying not to look at that as defeatist rather than just another avenue of help and way of building for myself and my goals. On the other hand here, I currently find alongside these realizations, that there are heightened feelings of isolation appearing in that the people closest to me, or even the wider circles of people in my life, have absolutely no idea of just how difficult day to day life can be, and this somewhat daunts me quite heavily. This is only exaggerated by the fact I've managed to achieve so much in the last number of years (work and personal accomplishments), that now I've kind of bypassed the true reality of what I face and people just think that I'm 'ok' or 'normal' when that's just not a fair or realistic judgement of how it really is. I've recently taken Wednesdays off work each week (along with my weekends as usual) in order to get a 'reset' point and to help me stop reaching 'overwhelm'. 5 weeks in and I am finding this helpful and something id hope to continue, but I'm concerned how long this will be available for as eventually the £££ side will become an issue, and it just doesn't seem like there's any kind of support on that front for people like us who are still very capable, but cant quite give to the full as they once could. Its unfair in that if I'd never of been able to return to work post injury, then id of been given financial support but now I have done, and even progressed forward, that only for years on realize the true obstacles this comes with. I keep hoping that this rollercoaster ride will settle, and I know in some ways this probably wont ever be the case, but on the other side, as long as I learn to keep on adapting and not 'lose my mind', I do believe there is hope for a reality in which I can continue to achieve, but more importantly, be content.
You have hit the nail on the head in so many ways BrownEdgeBoy! And I for one, of perhaps many, am in complete support of your excellent summary of what post brain injured people face.
Previously I was proud of the fact that I faced this thing alone and felt I was placed in a position where this was the only option. This of course was not entirely true as headway existed at the time of my injury and obviously I am not the first and only person to have experienced this kind of problem so there were fellow survivors to share my burden with as well. However, there is a general feeling of isolation every time you try to get back into society and there in lies the problem we all face. When I was younger I thought "I am tough enough to deal with this thing alone" this was not even true of my younger self in all honesty and the macho approach soon becomes diluted by reality as you realise you are not and have never been strong enough to deal with the enormity of this problem on your own. Bottling up your feelings? Being a real man? Take it like a man? Ha ha ha, what a load of rubbish! After a long time I have come to the realisation that no one has the ability to do this alone.
I also agree with the fact that if you get back into work, as I did too, then that kind of burns bridges of help that previously existed. This realisation makes you sometimes wish you had not made the steps forward that you did which made you self sufficient and able to manage your own affairs independently as you can no longer go back to where you were and the availability of support. I refer to my place in life with regards to this as no mans land. If you have developed significantly and got back into paid work and not disclosed your brain injury to your employer then you are back in the real world. But wait a minute! You still have residual problems which prevent you from fully reentering the real working world. Add to that that after a while you can't go back to claiming benefits etc. because you have been in paid employment and you are trapped between the two places.
The rollercoaster metaphor is definitely a way of looking at it, the unpredictable ride of every day, and how you long for one of those standard days where you knew exactly what would happen throughout the day pre brain injury, (you know the kind of boring days from the past that in reality you used to kind of hate.) Notice I said "long for" as in my experience whilst the rollercoaster becomes less adventurous over time it never really stops. True my mind used to be a lot more disordered immediately following the injury as I expect is normal for everybody but these days it still likes to change the order from time to time to remind me, lest I forget, that I had a brain injury in the past. Yeah, like that fact is going to somehow slip my mind!? Anyway it seems that disordered is in fashion these days as lots of music and many movies fail to follow any standard pattern so my mind is becoming more fashionable in this post-modern age - I have a post-modern brain.
Thank you for your comments they are very reassuring. At least I or we are not alone in this rollercoaster like life post brain injury.
Hi, you have explained life with a brain injury so well
I say that my brain is now split in two parts, one part pre injury and one part post injury and they really don't seem to get on with each other. Post- modern brain really sums it up well. Thank you
You are welcome Twice, I am thinking of introducing myself in future with that declaration "pleased to meet you, oh and by the way, be prepared for a disordered conversation, I have a post-modern brain." (Should you wish to use it too, please do 🙂)
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