I’m really intrigued as to what people mean when they say one has to ‘become a new person’ after a brain injury, as all I feel is half of the person I used to be, half a human being. I really don’t know how to survive this, most days I’d just wish I’d died because it just feels so fruitless. I feel I spend my life trying to get people to understand what this feels like, and all they see are excuses. All I need is damn support but it’s like no matter how hard I try to get somewhere, it just keeps messing up. This is not life, I’m so tired of waking up to the same pointless struggling, where everything is so black and white to ‘healthy’ brains, that they just criticise my every move and I can’t defend myself as half the time I feel so ill, or I can’t understand what’s being said or just don’t have the physical energy to stand up to it. I’m so tired of being someone else and being misunderstood.
How long have you felt this way? How long has it been since your accident?..Im not sure I agree with becoming a new person…Im a totaly different person thats for sure!
As Ive said many times here, after all the fighting,…crying,…giving up hope…All that is far less when we start to accept…
It is not easy by all means, but thats the point when things are more tolerable, a bit easier to coup…
I wish I could do more for you than just words…My 10 year anniversary is right around the corner…On my one year I had a breakdown and was hospitalized…I thought that was rock bottom…it was not…
I found that I had to get far away from loved ones as they never understood and still dont…It made life harder, but happier…
It’s been 9 years, will be 10 in feb since my accident. I just don’t understand what is meant by acceptance, as that’s not how the world works.
I have just come out of hospital after a breakdown as well, and they were more concerned about the psychology, even the damn health professionals are freaking oblivious!! Not to mention the person I’ve trusted the most and thought had my back, my partner, has left. Basically he said I’m just a freaking burden & couldn’t do anything right. It’s easy to say just distance oneself, but I need support and I’m just not finding it anywhere. I feel so isolated. It always comes back to them saying that I’m not putting in the effort, meanwhile I’m killing myself trying in the process!!
I just want this pain to stop…
What you write is so true, as a TBI can become this source of torment. What you call “half a human being” from a TBI can be this unbearable reminder of our alienation from life. It may feel like everything is mocking you, work mocks you, family may mock you, life itself may feel like it is mocking you, and then your failures mock you. It appears your TBI cuts you deeply and you may feel this need to do away with this tormented consciousness. Because you may feel cut off from life I wish to recommend that you step into this mind that is aware. There is a part of you aware of how you think and feel, which can perceive patterns that are actually present; whereas the madman/madwoman imposes patterns onto every circumstance.
Awareness operates at a profound level. Awareness is about being aware. Awareness offers this place of emotional detachment before the mind goes into anger, depression or schizoid withdraw. Awareness of what is can offer this acceptance and helps to abide in what is true. There is nothing to identify in your thinking or feeling but just this awareness of what is. It helps to release this intense involvement with thoughts of missing the mark. It may seem strange but awareness about being aware will offer your heart back to you. It seems to offer this internal compassion for our person without getting stuck in our personal demands and particular self-image.
Another way to express the meaning of awareness is it helps to release this need for our value to be based on a particular achievement. It liberates the mind, even with a TBI, so you can experience the depths of your heart. So maybe try to be simply and genuinely be present to your awareness, because within you is this awareness of your heart as a preciousness person. I am just suggesting, off-and-on during your day, maybe step back and just be aware, and may this awareness help to release your discouragement of your limitations.
I believe in you and I believe deeply in your good heart.
Ok, Astrid we have alot in commen…
I walked away from my family, they never got it…Best thing I did…It was awfull and no one cared…That helped me so much…it was so hard for so long but the only arguments I had was with me!..I mean it…We beat our selfs up because we cant remember or I would of never done something so stupid, ect,ect…you know…
So many times were are own worst enemy’s?..I was…I keep things simple got off the anti depressents (had to prove to drs I could coup)
I try to eat well and take care of myself best I can…Learnd some yoga, meditation, found Kirtan music…It was a very slow prosses…
So when I say acceptance…excepting its ok to forget , but dont blow a gasgut…I hope you can try some new things and maybe one will click?
I have plenty of bad days…But if I keep it simple they bad ones dont drag we down…
I hope thats kinda helpful?..But hey it helped me to know I wasnt alone, and I hope you also understand your not alone, nor is anyone else who visits here!
Totally understand how you feel. I feel the same a lot. Good suggestions by everyone so far even if they are slightly over my head.
I’m on my third going to fourth year. I’m not sure if I can say I accepted it or gave up. Eh.
Im sorry people in your life are not accepting. Most of people in my life are not as well but the two or three who are im very greatful for. They don’t really understand but they help.
For me what keeps me going is my rabbit. I can’t do much. But he always loves me and someone has to be around to love him
I try to be happy about small things. Like not having a 24/7 migraine. Or being able to remember to put my coconut milk back in the fridge. Like someone else said about awareness. I think. It was complicated. I only half read it. Whoops.
I find the medical community… Not as helpful as I wish. But if they help by all means keep trying. More power to you.
Biggest helpers for me have been (in no order):
1 a consistent sleep schedule.
(I can’t take naps because it’ll give me a migraine so I’m sleepy a lot of the day. But I used to wake up an seem like I was stoned and now I’m not too groggy. Adjusting was difficult but so worth it.)
2 my rabbit he’s why I’m still here (do you have any pets would you want one?)
- I drink so much water. I kinda just drink mostly water at this point that helps. I got a pretty spill proof bottle. Has made my month so far. I spill things a lot.
4.I try to go for a walk everyday. Pokemon go got me back into it but even a tiny walk when you can.
- I don’t eat dairy or eggs or grains. I hate it but it’s an autoimmune thing since my injury. Avoiding sugar helps but hey I have to eat something besides meat and veggies or I’ll go crazy.
Sorry if those are all things you do or are common sense but they’ve helped my mood some. I too still have bad days. I just try to do what I can.
I promise I’m not trying to sound preachy ethier. It’s just what I’ve noticed. Lots of people mention meditation but my brain waves are too high normally and I can’t get to that zoned out place. Try making small changes. If you can. Big hug. Hang in there. You aren’t alone and we’re always here like others have said. sorry if none of that helped it just my experience.
Ohh boy, do I understand where you are coming from? HELL YEA!!! My initial injury was the result of an MVA as a young child. Now back then there was no scans available for a TBI. I was simply told “Had a bump on the head, all OK…” Over the years there were, hmmm, let’s just say “Behavioural issues” and I was simply labelled ‘a shit of a kid’ and I cannot deny it, I was an absolute little C^&%. It wasn’t until some 20+yrs later that an actual diagnosis was made and then only due to symptoms becoming life threatening. My symptoms got worse and worse. Then one day driving down the road and the lights went out. I couldn’t see. This made them investigate. They finally did a scan The dr’s came out with a line of “ohh, look what we found…” like it was some big surprise. I’d been telling them something wasn’t right for years and been labelled everything from crazy to an alcoholic/drug addict to a hypochondriac. Even being locked up in a psych ward “…cos he must be crazy to be having those sort of symptoms…” Society’s general opinion is that the dr’s ALWAYS know best and please excuse my language but that is BULLSHIT. If the answer is not within their medical textbooks, then there is no answer. The problem is not medical, its psychological. “He’s crazy in da coconut”. My family had faith in 2 things, God and Dr’s but certainly not in me. So, I left
Then the dr’s operated “all fixed” I was told, but it wasn’t ‘fixed’ at all. I questioned the dr’s (p.s. They DO NOT like being questioned) How dare I question a medical professional? They have done years of study and me? ppfftt I’m just the patient. I simply wouldn’t know. But I did know something wasn’t right. 6mths later and I was back having further surgery and again was told “All fixed”. I was having some awful, awful symptoms but again no one was listening. So I pushed myself and pushed HARD. I ignored symptoms and paid dearly for it as it turned out. But if no one listens then what options do we have??
Then I collapsed at work and was rushed to hospital via ambulance. And the damn dr’s got angry with me “Why didn’t I say something?” I HAD!!! But no one listened. They operated 3 times that year and yet again each time I was told “All fixed”. Now if this is ‘fixed’ then I think it’s another word starting with ‘F’.
Astrid, I have learnt I have to manage all of this for me. Not the dr’s, not the family, not anybody else, but for ME. They may all think they know, they don’t. If you fall and break your arm, its your arm that hurts. Give it 8wks and your arm heals. That is not the way the brain works, that is not the way the brain heals. No two brain injuries are exactly the same, so to be saying ‘x’ injury results in ‘y’ symptom/s is impossible and trying to get others to comprehend this can be a massive hurdle. This is where I have found this group an absolute godsend. We know from our own personal experience, not a textbook, not a dr’s opinion but from what we have to manage each and every day. WE UNDERSTAND, so please try not to become overwhelmed by the judgement of others, come talk to us. We understand in a way that nobody else ever can. This ain’t easy and anybody who tells you it is has NEVER been ‘here’.
Come and talk to people who know. Come talk to us.
Thanks to everyone for their feedback and support! I feel very blessed.
I appreciate your message, however as Caitlin mentioned, it pretty much flew over my head too. This 'awareness ’ that you speak of, is this a ‘spiritual’ experience? Because no offense, if it is, my biggest problem is having lost one or two ‘levels of consciousness’ if you will.
I feel as though I’m only ‘awake’ every split second or so, as though one watches a movie and the screen keeps on cutting out. If I’ve learnt anything from my injury, I’d say that I have personal proof that we are simply, our brains, and this idea of having a ‘spiritual’ side no longer makes sense to me.
I appreciate you sharing your pain with me. As Caitlin mentioned, the meditation thing hasn’t worked for me as I live in an area that’s not exactly safe, and just knowing that I am unable to make good decisions at the best of times let alone in an emergency situation, I am forever in ‘survival mode’. I find it difficult to get the time and energy to put things together and into action in a logical format, as I do work full day, so I’ve tried to do the eating healthy etc, it’s just frustrating not being able to just freaking well be and do as it should be! How were you able to get things organised so that you are able to do your meditation etc, your activities? How do you stick to remembering etc? That’s my plight…
I totally understand when you say you don’t know if you were accepting or if you just gave up, cuz it’s like one is submissive cuz of the lack of ability but yet we carry on every day…
I think my partner leaving has been so tough because I always knew he didn’t really understand, but he has been my lifeline. Now I just feel like my quality of life has halved. We end up relying on other people in a way that isn’t healthy I guess, and they act like we’re not pulling our weight meanwhile I can’t be who I need to be to add to a relationship in a healthy way. I just feel so pointless.
One of the things that bothered my partner was my parrot. She is unfortunately not tamed, but not unhappy yet she is caged. She has brought me so much joy over the years, but it breaks my heart that I can’t look after her in the way that she should be cared for. I don’t trust anyone else to look after her either and my partner constantly used to remind me how cruel I am for keeping her.
I definitely appreciate your input re things that are most important. I also have tried to get into a routine when it comes to sleep, which I find very difficult as some days I’ll have more energy to do things then realise I’ve gone over the mark. I need at minimum 8 hours of sleep, and I need at least two hours prior to going to work to try and wake up not feeling ‘drunk or drugged or groggy’ as you mentioned’ and to get myself ready. I must say I really like your sippy cup idea!! I think I might just try that, as I also tend to spill… Unfortunately it’s not an option for me to walk as I just can’t stand being around people, don’t feel safe, and it takes a lot of effort for me to organise to go for a walk. Often when I get back home from work it’s also already dark. I’d love to be able to just be with nature…
It’s amazing how one is labelled for ‘bad behaviour’ meanwhile you feel like absolute crap and there’s no way to actually vent it!! They often talk of the brain ‘healing’ and creating new pathways but quite honestly I think they do just as you said, talk shit!! I really can’t say that I feel I’ve healed in any way, if anything it gets progressively worse!!
I really do appreciate you reaching out to me. Right now this is my only place of comfort, which doesn’t relieve the physical human contact that I crave, but it really has helped me tremendously.
Thanks once again everyone!
For me it is about accepting that I will soon die, and by soon, I do not mean immediate. I mean that life is so short. It is on my mind a lot after the accident, but that is not what I mean. I guess when you almost die it all seems to brief. My accident was bad and I have many other injuries. I gave up on a lot like school and stuff but also gave up on needing to be right or do things perfect or win an argument. I miss my old life, but it is nice to not even be ABLE to ruminate. I cannot do it anymore. Seeing the good even in the tbi.
What you write to all of us is excellent. What I appreciate about you is your realness and your honesty. If my thought on awareness is not a key for understanding your depth it does not matter. I believe what matters is your “awareness” around your mental ability. You express, “I feel as though I’m only ‘awake’ every split second or so, as though one watches a movie and the screen keeps on cutting out.” In these words I feel you are being aware and you are getting at a profound level. These words are the awareness I am writing about and hidden within your words appears your heart. So in a sense I am trying to respectfully touch your heart and to make this a part of your awareness.
You have a good effect on me because you appear generous with your time, your attention, your resources and you appear to give your best. This is encouraging, uplifts my spirit and instills confidence. There is few things in life as powerful as instilling the feeling in others that you care, believe in us and you are on our side. Someone who cares, which I feel from you, nurtures confidence and creates a climate in doing what is best for each other. It is like saying, good parents want what is best for their children and you want is best for us. So in your nurturing and encouraging ways I am just trying to make you aware of this strength I feel from you.
Awareness is discovery, like discovering the gold hidden within you. Your gold offers a spirit of warmth, concern, caring, generous and giving, which I just want to make you aware of this quality within you. Your gold is an immense and it is a privilege to be allowed to be a part of you. Your gold is a strength within you. I am just trying to give you my awareness of you and to allow you to be aware of your value. And maybe this meaning is beyond you, yet I still want to express what I feel is your gold and what is true about you.
Your presence is significant, Astrid.
Thanks for sharing… I understand what you mean by referring to our ‘near death experiences’. It’s almost as though, much like in horror films, one has a basement or an attic room with a locked door where the key has been lost. So you walk past the door sometimes and wonder what’s inside, majority of the time you forget it exists. Then one day the door just suddenly opens by itself, and the darkness tries to suck you in. Fortunately or unfortunately, the door gets bolted back on before you are completed enveloped. The door is damaged, there’s cracks in it. So you’re left with a daily reminder of not only what happened but that it is so final, as all those that were in the house before had to eventually go through the door…
Okrad, I wonder about your injuries. Do you have support, and is this why you’re able to be so positive?
I’ve always admired your ability to articulate things and give such soulful advice. I do understand now what is meant by the awareness that you speak of.
I apologise if I am too abrupt or direct, this was one of my many flaws that was pointed out to me by my ex. I was actually never like this before, I simply get frustrated in myself, and often it is not expressed very well. As a matter of fact, that’s also where my ex seemed to be so confused. He said I have the knowledge that I have limitations and boundaries, and so I should just get up and go do something about it. And no matter how I try to explain it, it’s not about just knowing these flaws as much as it’s about being able to find resources, things that come naturally to people, in order to find more resources, in order to sideline the ‘flaws’, and thus get on with life!
I appreciate your efforts in building up my understanding of the positives that you feel I have, I do feel very frustrated as caring in the way that I have left doesn’t always help when it comes to the workforce. They want results, not effort. And sometimes they don’t even see the effort, as for them everything comes naturally. But once again I do appreciate your advice and just being able to vent to those that understand…
I wonder how many of us read each other’s stories saying , “me too!” the whole way through. I hear you about spirituality…I tend to think my soul/brain interface is damaged. I still believe in a higher power, I just can’t perceive it anymore. I miss human contact (other than immediate family) desperately. I don’t know how comforting any of this is, but I sure mean well and hope things work out for you.
To date that is THE best description I’ve heard, it’s as though I’m losing contact with the ‘mothership’ so to speak. Just makes one feel at the end of the day, that we are in fact, our brains.
I absolutely hear you with re human contact, and I find even whilst being with other people that I’m still so alone. It gets confusing and frustrating for all parties involved. But thank you for your kindness and reassurance…