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Traumatic Brain Injury

Hopelessness & Non-acceptance

#1

Words cannot do justice to the level of hopelessness and heartbreak I feel. I am two months post-TBI, and every hour is lonely and full of despair.

I feel trapped in my body and want to claw my way out of my own mind but cannot. It is as if my soul has died. Can anyone relate to no longer feeling connected spiritually? No longer connecting to the world, to other people, to yourself?

I think I had more hope when my focus was on relearning to speak and bathe. Now the moment-to-moment reality of the less visible, but wholly devastating, deficits is sinking in.

It feels like I should have and already did die. I am sorry if that sounds awful. I imagine I am not the first to feel as such.

How do you find a path to acceptance? Will it feel this painful forever?

Thank you if you read the above.

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#2

Hello mindhug, and welcome to our TBI support group. I’m Seenie, and I’m a Ben’s Friends volunteer who works mostly as an organizer on our thirty communities. I don’t usually respond to member posts, but I read your introduction, and it made me want to welcome you. I’m sorry that things are so difficult for you, but I can tell you that you’ve come to one of the most supportive communities that you could ever want to join. The people here are wonderfully welcoming and kind. We’re glad that you found us, and we hope that you will be too.

All the best to you

Seenie from Moderator Support

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#3

Hi Mindhug. I hear you. You don’t have to apologize here. Here, we all know how it feels, too. What you say doesn’t sound awful and you are right, you aren’t the only one. We’ve all felt that way.

Joining this group is part of the path to acceptance because you know that instead of being 1 in 7 billion you are really part of a large group of people going through it. They have a lot in common in terms of recovery. Sometimes it is nice to know that we are not unique, nor alone. And it is nice to have a place to share and vent and discuss and consider and research. There aren’t many resources out there that are a dynamic and flexible as here. So see if you like it. Read some old posts and check it out.

You will have ease again.

Thanks for sharing and keep at it. We are in it together you know.

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#4

I have to agree with Occipital, you are not the only one who has gone, is going or will go through this hell.
For a long while I went hunting for acceptance and become hugely frustrated when at every step I’d fail to reach my own expectations. I believe that because I couldn’t reach my own goals, trying to reach other people’s expectations was impossible. This tended to add to my frustration. I have tried and tried to reach some ‘simple’ goals and once I could prove to myself that even small aims were a real struggle, it became a bit easier to acknowledge my own limits. I gave up on other people’s expectations and judgements. I now manage all of this for me not them.
When I came to that conclusion the acceptance bit became a little easier. I will never tell you it is simply easy, cos it ain’t, and some days I still battle with those limits, pushing the boundaries, but knowing if I over do it today, I’ll be paying for it tomorrow.
Is it this painful forever?? That’s a “How long is a piece of string?” sort of question. Every injury is different and so are the results, so to say how long it will last is impossible. Even the dr’s can’t answer that question. For me, I find I need to be flexible. I can never tell when, where nor why I’m going to be symptomatic, nor how severe. I just have to be prepared as best I can. My body gives me subtle warning signs, if I listen for them I can manage around most with rest and medication. But initially I thought if I pushed past the signs I’d build stamina, when in fact I was driving myself further and further into the ground. It was my wife who identified this initially. I couldn’t see the woods for the trees (as they say).
My advice, Don’t be beating yourself up too badly. You are here talking to us, that’s a plus. You’ve put your hand up asking for advice, that too is a plus. We don’t have all of the answers but we do have the experience on a personal level. Very personal. And we understand in a way others simply cannot. Come talk to us.

Merl

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#5

Thank you for the kind welcome, Seenie, Occipital, and Merl.

One of the only things that has kept me going lately is the knowledge that other people have walked this path before me and are finding a way through.

I appreciate the understanding and wisdom. In this situation which “nobody understands,” it seems you all do.

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#6

Been there mindhug, we all have. I am 22 years out, and have learned to address my despair. Not to say I don’t slide back to feeling sorry for myself from time to time, but I have learned how to pull myself out. I think about the leaps I’ve made. They may not seem like much to normies, but to survivors they are HUGE!. We are conscious, a huge step. We can think, type, make sentences, make sense. Try to see what you can do, not what you’ve lost. Where you are is a known place for survivors, but it only lasts as long as we allow it. It’s not hopeless, where there is life, there is hope!

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#7

Been there myself but I was 15 when I had my first TBI and it has been 20 years since I was working in a college biology and Chemistry lab and was exposed to chemicals that no one should be exposed to. You are so new at this you are over welmed. Someone should be helping you break your daily tasks down into little bits that you can handle. As you learn coping stratigies living with your TBI will become much easirer and you will learn that eventhough you are a new you all of what you were is not gone…you just need to find easier ways to get things done. Before my TBI I did not take on leadership roles now I do because even with my numerous TBIs I have learned that I still have the ability to get things accomplished that other people that have not had a TBI are afraid to tackle.

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#8

mindhug you ask, “How do you find a path to acceptance? Will it feel this painful forever?” This acceptance you are looking for I personally do not feel is ever natural. The brain losses its ability to have a flow and things turn around in the mind seem involved, so complex and exhausting. I even stopped trying to be in contact with people, even burying myself more completely in my work and my ideas. I became a workaholic, trying to fill in the holes of failure and being humiliated. I also used pride/arrogance to compensate my mental limitations, misrepresenting myself and my abilities.

So for me finding this path to acceptance is lots of letting go, especially grandiose expectations I have of myself. I had to learn to let go of feeling inadequate and defective, unimportant and undesirable. I had to let go of feeling shameful and misunderstood, turning anger and aggression against myself. I had to learn to let go of feelings of hopelessness and despair and then down into the powerlessness. Power is the ability to get things done and falling into this powerlessness made the rage just explode out of me. Yet as I have gradually worked out my powerlessness, finally, I feel a touch of acceptance.

In a sense, I suspect you are dealing with powerlessness and is closely associated with hopelessness. It feels like death in every cell in the body, which can cause flight or fight, then the body fills with terror because the mind is filled with terror. This powerlessness is torment, like the parents who lost a child. I suggest you find ways to let go, such as a walk beside a creek or go to a share group where you can speak about your feelings of powerlessness. During the sharing just allow yourself to let go. Also maybe look for small ways in offer yourself security and serenity, as finding power and security in your mental process will bring about insecurity and powerlessness. I suggest you be creative, like painting that gives you a place to release this powerlessness.

Your second question, “Will it feel this painful forever?” From my experience of letting go and release statements the brain begins to flow like a river, maybe not the way I like, and yet the flow creates this acceptance. It may feel extremely uncomfortable letting go and letting the river flow downstream, because the water rips the banks out, threatening and unpredictable, ultimately meaningless. Yet it is in the powerlessness we find acceptance and there is a great peace here. It is a place of learning to trust and the pleasure becomes the journey. Maybe name your river, just do not call it Denial, as this type of acceptance has a way of getting through problems by tuning out. It becomes fatalistic, feeling nothing can be done to change things and whatever the problem it is not a problem after all. This is more like resignation, a giving up, rather than a mature letting go.

Let go, feel the shame, fear and rage and keep letting go, as the river will teach you how to be effortlessly yourself in your disability. It is like nature’s way of acceptance and learning to not be defiant.

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#9

Mindhug, I experienced and am experiencing tur same thing. I find that it’s best to have an outlet for the hopelessness. This could help you accept. I’m not saying any of this will “cure” your feelings. I want you to know that you are not alone. The people on here are amazing. We may only be connected by cyber space but it’s so much more. They will support you. If you need anything just post and someone will answer. Your not alone. That’s the most important thing to remember.
Thank you for posting.
~adilyn

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#10

Shy on words but feeling grateful to you all and am soaking up the not-all-alone feeling today…

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