"Brain Injury Is ..." Brain Injury Defined By People Who Are Living With It

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It feels like I’m not in the real world anymore. Confusion, moments of clarity, more confusion, you can hear things but you aren’t listening, like the sound the parents make in Charlie Brown movies “wa wa wa” monotone honks you aren’t listening to. Anxiety not of physical harm but of not being understood, as if I had some type of autism. Used to be smarter and articulate now just trying to achieve bare minimum. Used to be pretty empathetic but it seems like I have none to spare for others, I spend it all on my self. Self fulfilling prophecies don’t apply to it and there is no initiative to take to get over it. Take the help you can and let time heal. Don’t make anymore dumb decisions.

Hi, does the PVT. stand for Private? If so think you SOOO Very much for defending our country. I am sorry you are suffering, I to am in your same situation and I couldn't put it in to words like you did thank you soooo much for that. God Bless

Like being on sloww dial up and everyone around you is on High Speed internet

My brain has become like a mobile phone. Still clever, but the batteries drain quickly and when the last bar disappears my brainpower goes in one second to zero. Then just stop talking to me please, I can't accept your talking anymore and this annoys me greatly.

Yes 100% best explanation! I often describe it as being on really slow dial-up when everyone around me is on High-speed internet. My DSL up is extremely slow or it just bumps me offline totally

Like living in fear 24 / 7 and no one understand

I agree

U just want to go back to being u; but ur gone. Everything is scary cause it requires thought. Nothing is automatic anymore. Confusion leads to anxiety. Which leads to fear. Which leads to being alone.

That is the truth. Nothing is automatic anymore. It's a living hell.

WOW Dennylee You said Exactly what I have wanted to say for YEARS and couldn't bring it to words. THANK YOU

It is like living with a demon in your head, being forever careful to contain the enemy within, while it destroys your memories and sense of who you are.

My life now is just snap shots. My wife misses who I was. Me too.

How do I explain to someone I now have dizzy spells panic attacks anxiety memory loss that I'm slower and things are harder for me when I can't even understand how why this happened or who I am anymore.?!?

Jennifer, you took the words right out of my mouth! My brain surgery didn’t leave me so out of whack that it would be easy for all to see. It left me just off enough that I no longer feel or sometimes think like the way I use to. For me it’s like my “flow” of life was taken.

After my surgery, no one talked to me about the mental health issues I could have after. Nor did we get any paperwork. So “looking fine” on the outside, therefore, left everyone thinking I was ok on the inside. No one believed me. I was told it was just anxiety and to get over it. Thanks, people, not very helpful.

I struggled and searched for answers for four years before I was acknowledged as having brain trauma and that I wasn’t making all this stuff up. My husband threatened divorce as extra added STRESS! Ya, how do you tell someone what is going on in your head, when you can’t even figure it out. All I know is I don’t feel like the same person I was before the surgery. I’m still having a problem with the oh so much SLOWER pace that I have to be at for my brain not to get tangled up in knots, and go crying into the next room.

People tell me to go to a support group. Ok, which one? Brain injury, stress, anxiety, depression, memory impairment, ADHD, bipolar, marriage counseling or possible divorce.

Wow Exactly how I FEEL

You can explain but unless you are us; they don't get it. I have people I care about go here on Brainline. If they care, they will take the time and read. If they won't or don't; no need to explain anything

I feel like an economy car in a race against super cars

Feeling like I don't belong anywhere.
Wondering if death would have been easier.
I look in the mirror and see the same face but then I open my mouth and hear a stranger. Loneliness.

I am so sorry you feel this way. I understand because I felt the very same way and on occasions I still feel that way. Please give a call to someone, anyone when u feel this way. Connect online with me and I will talk with you as well

Dani I have chemical brain trauma symptoms are ever changing does this ever get better

I look into the mirror and see someone who looks similar to me, but it's not me.

The real me is gone.

It is horrific.

In the beginning I remember looking so different i actually looked in the mirror and thought who are you? I now look normal mostly but I'm still trying to figure out who I am now.

Erika, this is the first time I have heard anyone mention looking in the mirror. I have the same experience. I see my face, but I don't "see" me. I also feel like I don't belong anywhere, even in my own home. A lot of people (family and friends) get frustrated with all of the behavioral changes, especially since, like most, I look the same on the outside. I have started meditating. Not easy to keep my mind "still", but I am finding that it is helping.

Joni I am sorry, I replied to you and started it off by calling you Erika (I guess I saw you say it and it stuck) Sorry

Erika I feel the Same, I thought about Meditating or Yoga, However I can not get my head to stop long enough to finish a thought, or an activity. UGHHH Best of luck, and God Bless

Michelle, no apologies (referring to your second comment). I understand completely. Meditating is tough. My brain wants to keep going and going, so I try to concentrate just on my breathing. Sometimes this works. I am registered for a TBI yoga class that is starting in few weeks and I am terrified. I wish you the best and God Bless you too.

My experience, Post-TBI (and viewed in the most positive way), has been like starting your life all over again. Most obvious to me is that, after the injury, I cannot attend elementary, middle, or high-school again. If anyone can understand that without that educational foundation, attending college (because that is where you find adults) in order to further one's education, could be equated to someone learning to swim by being dropped-off in the ocean not knowing which way to go.

I am not suggesting that recovery (learning to swim) is impossible (depending on the extent of the damage), but the path is littered with hills and valleys. Depending on the Day, those "hills" can be mountains and some of those "valleys" may as well be cliffs.

Imagine an 8 inch funnel full of water with your finger plugging the outlet. Now sprinkle glitter into the water. Imagine that each piece of glitter is a thought or idea. Remove your finger from the bottom of the funnel and then realize that you have no control over which thought or idea will come out next. . . . Welcome to my experience.

I have found humor (as well as truthfulness) in the following quote credited to an unknown author: "Better it is for you to think me a fool, than for me to open my mouth and remove all doubt."

My mTBI happened on July 11 this year from a fall onto rocks. Four and a half months later it still feels frustrating as hell - like I am a stranger even to myself some days. You do things and misunderstand people in a way that you would never have done pre-mTBI when your cognition was at its best. You can no longer control your temper and lose it saying horrible things to the people that care about you most - and feel awful when the emotional launch is over. I struggle to cope with bright and artificial light - not ideal when you have to close your eyes in the car as a passenger and realise driving is not on the horizon anytime soon. I also struggle with noise - not good when you are a teacher! I am still not back at work yet due to the driving I do as a Resource Teacher and my work colleagues do not seem to understand just how crippling the fatigue actually is - it could be deadly if I was back at work. I am also trying to finish a Post Grad paper - retention of detail and the ability to locate the words I want to use in my assignments used to be easy but not now.

My biggest discovery to date and something that took some work to get my head around is that recovery from mTBI is not linear and, even though I look fine on the outside, it is still pretty mucked up on the inside.

I describe my BI as if my mental filing cabinet was shaken and the files were all put back in a complete random mess. I've spent the last 18 years reorganizing the filing cabinet and amazed to still find misplaced files. Speech is still difficult.

Feels like you are always on the outside looking in. And that you can only change yourself for one day because in the morning your not the same person you were yesterday

I feel like nobody understands and as if they think I'm pretending to have the symptoms .

I feel exactly the same way. I look the same on the outside but have such extreme difficulty dealing with my day and nights. My brain injury is from a 2nd concussion and people do not understand why 11 weeks after, that I am still having issues and not back at work. It's not like I had a stroke or have been in a major car accident.

Brain Injury is...

Looking down at your hands, and not recognizing them as your own.
When you speak, and your voice sounds unfamiliar.
Being unable to have a simple conversation because your mind becomes emptier than ever before after only 5 minutes.

Brain Injury is learning to live a life that doesn’t feel like your own. It’s an ongoing battle of feeling like somebody else is driving and you’re just along for the ride.

I can't think of a better way to sum it up than Christy:

"A constant struggle for the rest of your life … you know how you used to be and you want your life back … but it won't happen … it's like living in thick fog."

I've used the "fog" analogy many times. You can see what's immediately around you, but trying to think beyond the fog takes enormous effort and is ultimately impossible. And that can be immensely frustrating and brings up feelings of resentment and anger.

Was in a fog for a long time maybe 3 or 4 months. I was an engineer and used complicated computer programs, including Autocad. Lost all knowledge of them never to return. After seven months I became an out of control angry person. The doctor prescribed Celexa (an off label prescription). It worked wonders. I've been taking it 20 years. Tried stopping it twice but uncontrollable anger returned after 3 or 4 days. The left side of my brain is damaged about 15%. Problem spelling and higher math functions.

Friends often realize that you are not quite the same and sometimes find you strangely off key. I'm often misunderstood and lonely.

Sympathized. People just don't know how this thing works -- worse, no one really does -- and ancient misperceptions are the norm. And that it's such a personal experience doesn't help either...

I had brain cancer, about 20 years ago glioblastoma , which I was suppose die in 18 months. but nobody told me and so I keep living and thank God, I had six kids and now I feel like the child. With the way my kids treat me. I feel like they are always talking about me they don't trust me to hold the babies which are my grandchildren. After about five years after my one daughter had her children. She comes in for Thanksgiving and she lets her kids stay overnight at my house. Maybe it's because I got married again. I try helping my brain get stronger by playing brain games on the computer, I have a of trouble with my spelling and my math. Sometimes I wish I didn't survive this cancer, but then I did and now I just live with it. I have wonderful husband who accept me for me. I can't ask for much more I would love My children to visit me more, can't do anything about that either. life throws you a lot of curve balls I got too many.

I know how people feel with brain cancer as I've had 3 0perations for the glioma coming back followed by a stroke and partial blindness all cause of epilepsy and I worked fulltime I feel I should have not had surgery as I feel my brain altering it's pathways which scares me it's coming back

I had brain cancer and I forget how to spell and have trouble retaining things all of the time. I feel like I am now the child and I had six children. They don't all understand how I feel how it's not fault, it was something that happen to me.

2015, I died in my mind. Now I have no idea who I am. I knew what I was. But she is gone. I see the face but the brain is off. MIA Missing In Accident!!!!!! I have changed 180 degrees. I hate the new me. My voice, foods, smells, lights, noise, music. I hate who I am now!!!!!!!!

Waiting for people to be quiet without telling them to shutup so you can
continue with what you were doing, but wanting to tell them to shutup.

This is me. + I used to be such a social person. Now I am a homebody.

Totally relate to this - you feel so bad inside when it is your husband and children.

Isolation, emotional roller coaster, suicidal, invisible, a different person, over react, angry at doctor's lack of understanding, miss normal interactions and activities

Eternal "on-hold" (the music stops, you think someone is going to answer, then the crappy, old music starts again)

Some days I feel like I am wading through waist high mud, trying to complete tasks that used to come so easily to me, I never gave them any thought, and it doesn’t matter if I’m told I’m doing a good job, I still feel like I’m doing everything in the slowest gear and I can’t verbalize how worthless I feel.

I had brain injury and life has so changed for me. It is very frustrating that I am slower . My memory is not good and for no reason at all I am filled with either sadness, fear or anxiety. These emotions i feel daily. I just want to thank god for the support i have from family and friends.