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Traumatic Brain Injury

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#1

Hello my name is Jesselyn. I am 17 months post accident. I was hit head on…on the highway by someone trying to comit suicide. I am at a point where I need some people who understands and can possibly help me communicate better. I’m just feeling very lost and lonely and I need guidance.

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#2

Hey Jesselyn,
For a start, Welcome.
One thing I have learnt thru this brain injury journey is the EVERY brain injury is different. Some one can have exactly the same physical impact as another and yet their injuries be miles apart.
No 2 brains are wired in exactly the same way, so the damage from an impact cannot be the same for 2 separate individuals.
Communication is a must, we all need the ability to communicate. How do you see your communication issues? For example, when I’m agitated or tired, my words come out all wrong. I seem to offend people without even trying. I ‘try’ (not always successfully) to slow my often overactive thinking, so as not to be reactive, as often my reactive response is either extreme or understated. Breathing can help calm me, taking the time to mentally construct my sentences.
I’m not sure if this is the sort of thing you are talking about, but please let us know. There are many people here who may be in or had to manage a similar situation to yours. As I say every brain injury is different but we have all learnt different ways to cope and manage.

The last thing I’d like to say is this, if anybody tells you dealing with such an injury is easy, it’s a lie. The only people who can truly know what this reality is like, are people who have been here themselves. Dr’s can study all the medical books they like, social workers can make out they know all about it. But the reality is only those who have to live it can truly know. It ain’t easy for any of us. You are not alone.
We know, come talk to us.

Merl

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#3

I have never used a blog before so forgive me if I mess up. Thank you so much for the response Merl! It is so very comforting to truly know now that I’m not alone. I am surrounded by a loving family but when I get emotional I feel like the only thing anyone can see is the TBI. I feel like I’m always having to make excuses for myself and the reason I’m acting the way I do now and always compare to before. Mostly what I mean about expressing. myself is that I have some aphasia and if I get to a certain point I really don’t know if I’m sad or mad. Or both. I have a hard time distinguishing between those two emotions. I appreciate your kindness it has put me a little at ease! Thank you

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#4

I have never used a blog before so forgive me if I mess up. Thank you so much for the response Merl! It is so very comforting to truly know now that I’m not alone. I am surrounded by a loving family but when I get emotional I feel like the only thing anyone can see is the TBI. I feel like I’m always having to make excuses for myself and the reason I’m acting the way I do now and always compare to before. Mostly what I mean about expressing. myself is that I have some aphasia and if I get to a certain point I really don’t know if I’m sad or mad. Or both. I have a hard time distinguishing between those two emotions. I appreciate your kindness it has put me a little at ease! Thank you

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#5

Hey Jesselyn,
I find one of my biggest battles is that I have good days and bad days. Others have said to me “Ohh well, we all have good and bad days” and I agree, we do. But on the bad days I’m bedbound in agony and even on the good days I’m still not ‘good’. Sometimes I can be to honest and truly tell people how I feel, I have in the past been told 'Ohh it can’t be that bad" so now I’m less inclined to open up fully and expose myself to that sort of judgment. For most illnesses, you’re sick and you recover at a fairly steady rate. But with a BI recovery can seesaw wildly from hour to hour, let alone day to day. This fact can be difficult for others to comprehend. Now when I’m asked how I’m going I often just say "I’m getting there…"
That comparison of ‘before’ is normal. Some people talk about before and after, like two different lives and in a way it is. The problem of that comparison for me is that as much as I try I’ve come to accept that I’ll probably never get back to before, so looking back at my life before can be depressing because I can see what I have lost. I used to beat myself up about it, like “I could before, so why the hell can’t I now???” I think I have now learnt that this is about as good as things are going to get, I have to learn to work within these new boundaries. Don’t get me wrong here, I don’t like it one little bit but as much as I try to push myself past these boundaries my body pushes back, showing me those new limits.
I find trying to express this very difficult and the frustration is immense, it seems that at times others pick this up as me blaming them for my predicament, when I’m actually having difficulty finding the words to adequately describe where I am at on that specific day, at that specific time. Some people have told me this is confusing for them. CONFUSING FOR THEM??? That confusion is 10 fold for me, which just adds to my frustration GRRRrrrrr. Now, I often just say “Ohh it’s all shit, it’s just the depth that varies…” trying to make a joke of it, because if I was honest everytime someone asked, it would get really old really fast. People don’t want to hear that truth all of the time and I sometimes think they’re only asking to be nice. So I fake smile and say ‘yea, I’m good’. Some people will tell me “You look awful…” I often respond with “you want to have a look from this side” What they can see is minimal to what I’m trying to manage. Sometimes others just don’t get it. I’ve tried to educate them but often words just can’t express it.

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#6

Hi Jesselyn. Nice to meet you.

Know that “We are in it together”. For me this fact turned recovery from ‘impossible’ to ‘possible’.

There are things that only survivors understand. Things that you would only want to tell another survivor. Even talking about mysterious things only to find out that others have dealt with that too, can help a lot.

So share as much or as little as you like. Never hesitate to share any questions or topic that you like to sahre.

We are in it together and that really takes the load off somethings.

Have a great day.

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#7

Jesselyn,

This not knowing if you are “sad or mad” then feeling “lost and lonely” could be fear expressing itself. There may be this fear of being abandoned and alone or you may feel yourself looking to others to make you feel secure. Fear can destroy our self-confidence and can make us absolutely worthless. Our own fears and anxious feelings is something we all want to avoid. A brain injury, then, can make the mind race wildly and we are terrified by fears from which we cannot escape, after all, the fear originates in ourselves. Fear seems to have a life of its own.

If this is something you are experiencing, I suggest you dig up your courage. I am not suggesting you behave aggressively to toughen yourself up, rather let courage come from your center. Let it be your support and your strength. Courage is supportive and solid, which allows us to not-know the outcome of things. It is like learning to fall into this courage in the moment, where you can feel solid and real with yourself and others.

I suggest you not look for this courage or ask yourself if you have it because fear might be telling you do not have it. Courage is more like the sun and it does not matter if you believe or not any more than it matters if you believe in the sun. Courage shines and offers support, even an inner freedom to be spontaneous. It is beyond any beliefs or learned procedures and just more in the moment. And when you feel the thinnest cloud become between you and the sun recognize it as fear and just learn to bask in the sun — courage.

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#8

Hey Jesselyn for some persepective, still 6 years later I can clearly recall that early stage of recovery. The cause of my injury was a bike on car collison, as im still thankful to have been alive to this day. I then turned to this site and ever since then I have had great support, while sorting the madness inside my mind. All the same, I hope you find this as a place of comfort and pray that the days grow easier to bare as each one passes.

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