Is it just me or does anyone else feel that this TBI or ABI thing is a punishment? As though one is in a glass box, you can see the world outside but you’re not worthy enough to have access to it, like the universe is simply dictating to you to ‘stay where you belong’, which is to be repressed. Then I ask myself, is that just a sense of entitlement I’ve got there, looking at pretty much EVERYONE else, thinking, how come they have a beautiful life and I’m stuck with this shit? (And they do have damn easy lives in comparison to this freaking TBI crap!)
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Yes.
I hear you. (just edited the quote so this “yes” answer makes sense!)
You know we get to be mad, too. Right?
No Astrid, it is not just you. I am often saying “I must have been a real bad bastard in a past life to deserve this lot” Many, many years ago, before diagnosis I drew a picture of me locked in a cell, with the world outside. Talk about seeing the future.
What I now try to do is look more at what I can do, rather than what I can’t. Sure there are people who can do more than I but by the same accord there are many people who can’t. I have an acquaintance with a BI who stumbled down some stairs and broke his leg in 3 places. He required surgery and plates to put his leg back together. But as a result of the surgery he developed blood clots, which moved an caused him to have a stroke. Now he’s a resident in a support home and can’t even do up his own shoe laces. For me now I think yea things are not good, but at least I ain’t in his shoes. Often I think this is selfish of me to think like that, but it’s true. I’ve got to be thankful for the abilities I do still have and not be comparing my abilities to others.
Merl
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Dear Astrid,
No, you are not being punished! You are simply being Limited in certain ways comma until you are ready - hold on to hope!
You will get better and better slowly, very slowly; but you will adapt to the slower Pace in life. And every day will grow to be so rewarding, as long as keep trying to get better.
Please just take it one thing at a time. For example, I recently thought about, how can I make my apartment more efficient so that I spend less energy doing what I need to do? So I invested in good Storage Solutions like 3M command strips to hang my purse up, and shelves.
That took a little time every week.
And then I took a little time every week to organize things and put them away in my new Storage Solutions, and I was just ecstatic! At how much easier things got 
it was so rewarding and I did it all by my self,
Aloha 
There are important lessons to learn from our experience…
I am so grateful I have learned to change for the better…
Ike Loa
We can always be better, one step at a time…
Even better at enjoying who we are
Aloha
I believe it is just a stepping block to overcome! Have you ever heard of the law of attraction, or pay it forward, or a bunch of positive actions? I know it may sound trivial or a waste, but believe that the more good vibes you project onto others, the equal or larger amount may come back to you, it may not be immediate, but it will come back in other forms possible?
If you believe in something, it may become evident, so believe in the goodness of whichever may have happened, even if it may be almost impossible to do, just keep believing and things will change, maybe not drastically right away, but over time they will. Patients is annoying, after being in a coma, a wheelchair, eye surgery, etc, to being able to work and ride a bike, and skip stones:) It is worth while!
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Making a gratitude Journal really helps
Thanks all for your input.
Occipital: Thanks for your response. Yeah, I do know that I’m allowed to get angry, at home, that’s ok… The problem is when I get angry at work, which is pretty much all the time as I’m surrounded by superficial, cunning, domineering bullies who wouldn’t know what a boundary looks like even if it smacked them up side the face! They just use my deficits and anguish to their advantage…
Merl: Thanks for your response: I understand what you’re saying, with regard to what one can do. And I’m by no means ungrateful for what I have, but it’s exactly that which you speak of, knowing that at any second that the little that is left over can be taken away suddenly, just as it was before, regardless of the fact that one is struggling so just to maintain sanity now let alone finances to be able to survive etc. It’s not me comparing, it’s others comparing me! I’m just reaching a point where I feel like I’m not going to be able to work, if I don’t work, I don’t live, eat, survive!
LeilAloha: Thanks for your response. I’ve had my abi for 10 yrs now, not sure what I’ve actually been holding on to hope for really, it’s false hope actually. I haven’t found any improvement, as a matter of fact that’s why I’m so frustrated at present, its just getting worse. And we grow older not younger, so I don’t quite understand this ‘getting better’ that people refer to. I don’t know what pace I’m supposed to get accustomed to, I live in a very unsafe place, work with people who I feel unsafe around who are constantly trying to one up each other…
Storage for me is about how much I can cram into this one specific room so that in the event I get broken into, I might still have some stuff left… And after work its like my place just comes 2nd best, forgotten about because sleep is just far more important. I’d love to know what lessons I’m supposedly being taught, cuz it just feels like a cruel joke…
Rick: Thanks for your response. I don’t really understand how a life long debilitating injury is a stepping block… What does it look like when you’re on top of the block? Its like when they talk of recovery, as though there’s an actual goal for getting back to what we once were. Ultimately you’ll be ‘fixed’ or ‘healed’ as so many power & money hungry evangelical priests have proclaimed…
And this is the best part, does that mean that I was putting out ‘bad vibes’ into the universe around me, and that’s why I was given a head injury, as though I have any control over it? If it is about what we believe, then whatever religious beliefs one has, then that must be true right? So, everyone is actually right then? Before my accident, I was religious, and all I did was take crap from other people, and believe the best of people, which is why I landed up with a head injury. Instead of seeing the negative and being proactive I decided to be positive instead. I truly feel there is so much harmful pop psychology out there that makes things worse and I just can’t buy into that crap anymore, however religious and universal beliefs such as you mentioned will work for a lot of people as they’re basically the same concept as antidepressants. I would LOVE to have worked where I do now if I was healthy, the financial freedom, being able to see many different people. But it doesn’t help me now, all I am is incompetent, stupid, forgetful, lazy, and, as one of my colleagues put it, I should have just been a ‘house wife’ I’m so useless. I’m so tired of being so trapped and people telling you, you’re just being negative. Why are there no real answers! This is by no means a dig at you, I’m just so frustrated!
You are waking up dear. It sounds like you were strapped before. Just my observation. There is nothing wrong with you seeing the world for what it “really” is. It a bad and mean world, but you can fit in. There is nothing wrong with you starting to make a stand for yourself.
You mentioned you coworker insulting you…Tell him to go jump off a cliff. The world can be a cruel place to live for a TBI or not. I believe there are good people in this world as well. YOU have to teach people how to treat you by not allowing comments like that to slide. Stand up for your TBI and yourself! No one needs to be treated that way. You have your stages of healing, and it sounds like your in the middle of it. I had to fight my way for my family to accept that I was different after the TBI as they all expected me to be the same as I was before the TBI. I had a lot of trouble with my relationships until I accepted myself. (religious content removed by moderator support, please keep religious content to prayer and healing request category). Accept that and love yourself. Never let anyone treat you badly for being a TBI and/or woman. One day at a time. <3
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Dear Astrid,
At times, early on (I am about 15 years out) I did wonder if I was being punished for something.
I don’t think you are being punished. I think sometimes crappy things just happen to good people.
I do better if I don’t try to figure life out. I am trying to be done with that, because it makes me crazy.
Do you feel like you are being bullied at work? If so, could you go to Human Resources and file a complaint?
Hoping things get better for you.
It’s that “knowing” that at any second it could all be taken that both scares me and restricts me, well, restricts me somewhat, not totally. I ‘try’ to get done what needs to be done, first. Often if I complete the task and am feeling OK I think 'yea, I can do that as well…" being another task, only to find that by doing ‘that’ was that bit too much. I too had others passing judgement, so I’d push myself to meet their expectations, then kick myself afterwards. I have learnt, the hard way, I have to manage within my own limitations not other people’s expectations. They want to judge me, then fine, judge. I have a family member who likes to pass judgement and one day I pulled him aside and had stern words. And he got the message. He wants to judge then fine but come spend a day in my shoes, at the very least get yourself informed before you come judging me!!!
Astrid, as for working, I was lucky as I had an insurance policy as part of my superannuation, so I’ve finalised my mortgage and now I have a disability income. I must admit though, if I didn’t have the insurance, I’d be screwed good and proper. As for the bullying in the work place, keep a diary of it all. The if/when it all gets to much you have documented proof of the harassment. I have been in a similar position and although I did have stuff written down it wasn’t documented properly. My former boss was a manipulator and a bully. She went to our big bosses in tears and they accepted her version because I didn’t have it documented.
Document it ALL. Times, dates and what was said. Also list any witnesses with EVERY occurance.
Merl
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I was feelin the same like this is a punishment and has gone on for years. I kind of accepted that not all are going to be fond of me it is a shame.
Astrid,
Thank you for being real and expressing what appears to be deep feelings of despair and hopelessness. A TBI seems to make us feel lost and suddenly cut off from ourselves. Something in the brain can make us feel what we have done or failed to do now comes home to roast, and then suddenly we spiral in to some core of ourselves, both in shock and to protect ourselves from even more loss. From my TBI I always realized how I wasted precious time trying to figure things out and have fallen behind others in almost every way — personally, socially and professionally ---- and then I feel acutely ashamed. I envy others ---- everyone else seems to be happy, accomplished, and successful in the many ways which I feel I am not. For me I have had too much withdraw into self-absorption, I have gone the wrong way, wasted my life and now I know it. I feel terribly confused and racked with self-doubt. I am just a failure, never accomplished anything worthwhile and I fear I never will.
From this not accomplishing much, it creates sinking feelings. For me it can also create a total blockage of feelings, as if life has been drained from me. It makes me feel fatigued, apathetic, alienated from myself and others. Then the sinking goes into an emotional paralysis, unable to function. When I am in this state it is hard to exert myself and even finding a therapist is out of the question. Being depressed and alienated from myself and others makes things go from bad to worse. The fear will then set in that my depression is not just this inability to function, but I am doomed. The disappointment intensifies into a consuming self-hatred.
I have felt guilty for existing, outcast in life, and this endless suffering. I have felt pathetic and rightly rejected by everyone. I have become convinced that I was utterly and permanently defective. I absolutely had no self-confidence and I had no hope I will ever be able to acquire any. This chasm of inner darkness opened inside, like a black hole draining whatever life I had out. I have felt extremely distraught and unable to shake myself from it. The hopelessness plaguing me, violently tormenting me, has left me sitting alone for hours and barely breathing. The whole of life can becomes this unbearable reminder of my alienation from it. Because of my tormented consciousness I tried to kill myself indirectly through alcohol and some other means.
This is enough about my despairing feelings and I really do not like writing about my inner devil. And yet trying to express my feelings I am trying to reach what you may feel inside, such as anger, despair/hopelessness, inadequate, defective, unimportant and undesirable. Because of this you may feel shamefully misunderstood. My suggestion is try letting go of all feelings of depression and despair. It is also okay to feel God as godless, even sometimes a stumbling block of horror and uncertainty. And yet as you let go of hopelessness I believe you will learn to fall into a faith that should take you beyond any beliefs. This faith will become your support and you will recognize this actual supportive presence. It will become like the sun and it will no longer matter if hope and despair are there, Presence becomes the support like the sun.
This path of letting go is extremely hard, God is a jackass in it, and it is involved and complex. Then when you are “told” who you are not, paradoxically, you will find yourself falling into a center and is rather “soul-making”. So maybe burst into tears and feel the uncontrolled sobbing then let go again and again. You appear to be suffering and in pain so maybe for this moment let go and let yourself have a clear contact with your immediate experience. This letting go is learning the satisfaction is not in the experience itself, as it is the quality of our awareness is what makes the experience satisfying.
Thank you for taking consideration of my words and for taking in love others are giving you here. I believe in you and your presence is significant.
Merl,
Thanks for your solid, practical advice. I will definitely start to do the log, it won’t aid anything regarding management but it will help display patterned behaviour, perhaps it will allow me to take a step back and see things from a different perspective. I think just to get that into motion will be a challenge as simply getting through the moment is an achievement let alone trying to remember what happened, and where I made a record if it. As for the judgement, it’s mostly to do with general workplace criteria and then the judgement us handed out afterwards, so it’s not something that I can retaliate against, eg: I struggle with the concept of time therefore, I am sometimes about 10 minutes late in getting to work. (Just attending to the security of the place i stay at sends me into a state of OCD anxiety as i forget some of the processes and have to redo them not to mention not being able to sleep for fear of the same.) The majority of staff are “clock watchers” to the point where some will get to work up to 30 minutes earlier, not due to transport issues etc, just to outdo the another. I may sometimes be late in leaving for lunch or leaving after weekend shifts, not to make up for time but simply as I don’t have the luxury of attending to detail in the same way as before, but this is not something that taken into account. So ultimately, "my pace " has no place… It’s get with it or get out…
Thanks for your sharing!
Hi Aly704,
Thanks for your post. Your are correct in saying that there’s no point to dissecting this, going round in circles but unfortunately I find myself left with little else. It’s not so much a punishment for oneself but that we aren’t externally who we actually are inside, for other people. Dependable and just a part of life. I am constantly surrounded by an atmosphere of, if one doesn’t have something, they just feel entitled to take it, not to work for it, so I see many who are healthy but choose to be incompetent and self serving, and then one gets thrown into the same box for failing to meet standards set purposely to weed out those very people, and I’ll be screaming inside, this is not who I am! I am not like them, I truly want to be productive!
May I ask if it’s not too personal, are you financially stable, do you have things to look forward to and do you feel safe where you live? I just want to understand how others have to live in this. I feel very alienated from the world in my attempts to survive it… Thanks once again for your support…
Hi Danielle,
Yeah, it becomes quite a lonely feeling… Do you have things in your life that you can still find joy in?
Syd,
Thank you for your, as always, profound words. I appreciate you connecting with those dark, ugly emotions in order to help me. I am still simply lost as to what is meant by “letting go” of the feelings of depression and despair. I am in a permanent state of trying to prevent from being “attacked” and considering the senses are no longer what they should be, fight or flight kicks in and one is not in control of that state, it is just instinct. However I am not just an animal, therefore the torture. In nature, it’s kinder, you either live or you die. In human nature, you torture. If I was healthy, I would be as a river, adjusting and following around every bend, joyous regardless of the torrent. But with this it is as those I’ve become stagnant, like the river source is running dry, and “letting go” means dying or giving up on life. And I still feel I have things to do, even though I cannot do them in this body! I doubt any of us actually have any real foundation… Thank you once again for your honesty!
Astrid,
Yes, you expressed it well saying you are simply lost on what it means to let go and then feeling tortured for being a human being. I thought you described yourself well as to being a river “and ‘letting go’ means dying or giving up on life.” What I like about your words is your directness and authenticity. You do not put on any mask, hide your doubts and weakness, and you communicate the whole of you. And yes you still have things to do and your body will not let you, as you express “the river source is running dry.” This is painful words Astrid and this horror is like a beast pounding at the door. Naturally we look for ways to keep it out.
You also express, “I doubt any of us actually have any real foundation…” This seems to be the “hole” both inside and outside of all of us and for me this has placed me into deep rage. For some unknown reason I felt this need to fill in this hole and if I could not work to fill the hole I could then be pissed off. These strong impulses to fill this hole made me incredibly angry and it forced me to stop trying to make contact with anyone. My rage just burned and around my “nothingness” I could feel myself wanting to live on the street because of this terrifying attraction to the darkness. So it seems “letting go” for me was dropping my madman and the bitter sorrows of letting go was releasing this horror and uncertainty. This may not work for you, as we have different meanings about life and this is okay.
I just want you to know I feel this ability to be courageous with you and in your unique way you offer tremendous support. It is like being held up by you and you offer this tremendous supportive solidarity. It seems my heart can do no other than simply love you for your support and qualities of strength you offer. I do not want my words to be unseemly and unflattering, as my heart is simply offering a glass of water to you. Maybe you feel this ability to drink or not really makes no difference, as I just want you to know your quality is your supportive presence.
I feel punished for certain, along with many other things that seem unreal. I was diagnosed with Mild NCD due to TBI in February. There is nothing that is mild about it. Constantly re-reading things, rewinding what I am watching because I have lost my place, remembering bits and pieces of everything that I experience, having to hear that I have told someone something that I have no recollection of, having to hear that someone told me something that I have no recall of, losing my possessions, opening my computer to look up something and then having no idea what it was…and then the horrible anxiety and panic that these experiences bring. The worst nightmare of my life. One second I am one guy, the next I am another- I suppose forever.
and how could I have forgot (lol)…24/7 tinnitus, headaches, intolerance of noise and crowds, dizziness, visual disturbances…