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

Brain Injury Is...

Brain Injury defined by the people who are living with it ...

BrainLine asked our online community to share their personal definitions of traumatic brain injury, and the list below captures some of the many responses so generously provided by people with TBI.

Every individual’s experience with traumatic brain injury is unique, but there are many common symptoms and emotions. Anger, fear, sadness, and anxiety may be accompanied by difficulties with memory, pain, and the challenges of maintaining relationships.

We encourage you to add your own definitions in the comments section below, and to join the BrainLine community on Facebook, Twitter, YouTube, and Pinterest.

A puzzle … all the pieces are there but in the wrong order.

When the cursor disappears from your mental computer screen.

Brain fog, confusion, difficulty learning new things, being able to be “high-functioning” but being very slow at it.

An invisible thief.

Devastating. Exhausting. Widely misunderstood.

Scary. I look the same but I feel like someone else.

MIA or AWOL … Missing in Action or Away Without Leaving!

An invisible memory-taker, mood-changer, life-changer!

Like being under a constant waterfall and I’m just trying to catch my breath and not drown!

Thinking with speed bumps.

Like an earthquake in my brain that knocked down bridges and damaged highways and knocked out some —but not all —lines of communication. Some of these things get rebuilt more quickly than others, and some are easily re-damaged.

Like having everything in your life suspended in Jell-O, and just when you reach out for something, the Jell-O gets blended.

A family affair … when a family member has one, it affects everyone.

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.

Scrambled egg between my ears.

The absolute hardest thing that you can imagine going through!! Unbelievably frustrating and isolating.

Learning to live in a brain that sometimes feels like it belongs to a stranger.

Forgetfulness and a total personality change.

Scary. Frustrating. Annoying. Funny at times … sometimes I feel rather than get frustrated about one of my deficits. It’s better just to laugh about it.

Limiting, difficult, having to “relearn” things you thought you already knew.

Unpredictable and extremely misunderstood.

Like having the flu all day, every day … for the rest of your life.

Trying to catch clouds in a windstorm.

Posted on BrainLine August 19, 2013.

Comments (502)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I get that we are quick to anger but getting snapped back at is the worst thing

I feel like I am stuck on buffer going round n round ..,

Living with a T.B.I. is like living with a familar stranger & having a factory reset button in your brain like a Iphone. It's the worst thing I've ever had to deal with it's not that much easier 3 1/2 years later!
Anthony Scott-Harden

Thank you so much for your comment. I am only two months in my TBI journey but it’s still frustrates me every day. I have been told that it may take a long time, so I just have to try and get through each day I guess.

Learning that it’s ok to grieve for the person you used to be! Accepting the fact you’re still extremely smart it just takes awhile to get all the words out. Taking it day by day to get to know the new you and realizing you do have a good support system who see’s you and still loves you even at your darkest hour!

The world is flying by and I am observing from inside a bubble.

I feel like the world is speeding around me and I am On Pause inside a bubble!

My brain is like a house with doors that are locked and others are locked glass doors I can see the answers ori know it’s on the other side but getting to them isn’t always possible the keys to the locks are gone.

The less I talk and just agree to whatever it is they're saying, the more they'll except me. With that i spend less time getting so frustrated trying to be understood before forgetting what I was even trying to say and just giving up.

never being truly yourself again.... whole periods of personal history, gone, entire friendships, associations, goals, learned skills and personality traits wiped out in a second... those who have been forgotten react with anger and fear thinkin they weren't important enough to remember, now regarding you as something completely foreign and fake... while those you do remember slowly realize you are not the you that they know anymore.... your views have changed, your behavior is unpredictable, your interests no longer align, never able to fully understand what is physically outside of your mental capabilities. problematic issues define you or get dismissed as excuses like the only reason you act that way you do and don't change is because you chose not to... eventually they go, one by one, mourning the ghost of who you were, realizing that that person is truly gone.. that person died the second you broke your mind and isn't ever coming back... Meanwhile you are left to navigate the world alone. struggling to define this new identity while still subjected to the same expectations as others: keep a job, support a family, be responsible and accountable for your life, function like it never happened, like you are still playing with a full deck, succeed damnit.. like you are not dead and gone, like you are not a shadow of what you were supposed to be, a ghost on a hill long forgotten.

It’s as if you reached into my mind and grabbed those words!
Survivor of what three separate strokes left.

Thank you!

I may look the same as I did but I feel like someone totally different

I miss the old me and I really do not know or understand how to live as the new me.

My TBI affects me still today and it’s hard to describe to others, but here goes.
Often as I’m experience the moment such as eating, conversations, scenery - I will know what the meal should taste like, the subject matter of the conversation or the beautiful sunset - however I don’t know how I know how food tastes, or how I know the conversations meaning, or why the sun sets.
I struggle with knowing I will never be the person I was and not knowing who the person I should be.

Life is like ike being at a play. Sometimes you’re an actor, other times just a spectator, sometimes an actor who only wants to be a spectator, sometimes a spectator who wishes they could be in the play.
Often just feeling misplaced.

"Intense profound confusion" It is like dealing with things as if i am much younger, but at the same time dealing as if im much older, but neither one, the older or younger are me.

the solution to our problems rest assured in the future. I was able to excite new nerve pathways in my head, neck, and inner ear (not to mention a full body analysis and self-rehabilitation), and it takes years of isolation and family support. l

listen to your body. can u hear? what cant you feel? where?

sometimes I would have to imagine postures and muscle engagement I was incapable of performing, in order to bring them back into reality. if you have been looking for a way out, you understand. you learn about life as it is deconstructed.

be smart my friends, that's all we got

my experience is linked to domestic violence & right now it feels like he's branded me. I know that will release in time & turn into something beautiful & for the greater good. It feels so hidden & people think I'm fine, but the executive functioning is so difficult & my brain feels pressure, like it freezes up & blocks itself.

hi. so i recently made some progress in my little world. seems that everything is related to nerves, pressure, and spatial coordination (inner ear and spine). Have a glass of wine or a bath and try face, neck, head stretches. The only way to recovery is to excite the healthy pathways, without using the damaged nerves.

or dont, idk

... if only I could handle this calmly...

evil terrible thoughts . Anger galore but I dont act like that one bit. i am a good guy. innocent but poeple think I would act on this bs terrorizing brain

It’s like watching a scary movie with no ending.

It’s been two months since my head injury and I’m making great strides. The frustrating part is people and their assumptions or total denial. Ya I look good but my brain is not “Good”. I’m thankful for the over sensitive brain I have now, I see more, feel more, laugh more, love more, say more. I also hate it because I feel, fear more, hurt more, cry more, say more.

The TBI has created many challenges today .
But to finally get arpund them or learn to dael with , these days that feeling of acomplishment is hard worked for and aprecated in a much deeper wy .

Because of my TBI , the challenges are many !!!
So are the feelings of acompishment , much more than ever before . To hold fast a priortiy these days .

My challenges are many these days no dout !!!
But I have more opertunity to feel sucsess these days because of my TBI ...

The world flipped 180 degrees.

TBI feels like my brain was flushed down the toilet - and what is left is pieces of a puzzle to negotiate . (2 masters degrees+ and proverbially " can't tie my shoe strings: in the piles and clutter of life around me. I still work at pushing through fog to have another, hopefully better day. First TBI = age 22, last one, the worse = age 77:still striving forward.

The emptiness and isolation is the worse. You try to explain your feelings but unless they’ve personally been through a TBI, they will never understand. “Now the world is gone, I’m just one”………James Hetfield

I agree with your statement. I am a 22 year survivor of a TBI.

I am always scared my brain injury will show. I was very smart in math all my life, and tutored college level maths... now I wouldn't dare to tutor a grade schooler... I used to be told I had the "patience of a saint", now I get annoyed and frustrated, I loved the challenge of complex problems, now I am first level thinker and my brain won't hold the page for me to think several levels deeper, I used to program computers - that's simply a joke now as are my language skills - I get anxiety trying to have conversations and just dumb down my words and even then can't always find them.... I have a lot of anxiety that my brain injury will be obvious. It's been over 10 years and I still miss being smart.

Like being a long tailed cat in a room full of rocking chairs every day.

It feels like the “ghost of your own self” in your head trying to live its life in your place, even though you’re still alive.
The you that you’ve always known, just isn’t surfacing the same way anymore…. And everything around you is imploding and exploding, and you can’t do anything to stop it, because the you that you use to know and rely on, isn’t there anymore!

Like phyllo dough. Dozens of layers. You’re not sure if they will stick or separate, then the sheet is cut, stacked on top, you get lost, and the pastry is sent in for cooking.

I feel like the elevator can't reach the top floor or my lights or off & I am home!! I have mentally left the building! & how can you explain!! What u can't COMPREHEND!!!

I can relate. Especially driving a motor vehicle. You gotta drive erratic so you can keep your mind focused and not let your mind wander to fog.

I know the feeling

This comment hit my heart. This is how I feel eveeyday. I have been made fun of by psychotherapists, and lawyers, called angry and mentally ill by them. After my accidents I chose a lawyer who said they understood brain injury. They did not at all. I was completely taken advantage over the past four years because they said they could. Now I owe 300k to them and my life is over! The law firm was Pipella law.

it's been 3 years since I got hurt

my tbi has been a huge problem in my life. it's not something I want people to know about me, I don't want them to see me like this because I'm not comfortable with the new me.  I'm constantly trying to get back to the old me, it's been a battle. I took four solid punches to the back of the head at a house of a dude who I thought was my friend. I was held down and had a plastic bag ziptied over my neck. I was made to believe I would not be going home, that my body would never be found. I can't remember getting out of there. I can remember the people punching me having second thoughts on following through with their original intention. I remember staggering and falling against a cable guardrail trying to get back home. I remember passing out on my bathroom floor and missing work the next day. I remember waking up  confused and looking in the mirror realizing that something was missing/changed. I used to smile alot and it has been hard to do but I am getting it back.  I have a sensitivity to light, I get tremors, I get night terrors, or don't sleep, I lose balance sometimes. I can get some pretty major headaches that I never had before. I've had my fair share of thoughts of loneliness, feeling dumb and worthless, sadness.  I have felt lost when trying to explain to people that my brain is just chaotic and jumps to the worst conclusions. i get close with people and then I distance myself, because I don't know how to proceed
I realize I have a problem and I find solutions as I go. it's not easy opening up to people about a condition I acquired through violence. I want so badly to be able to revert to my original settings.  It's like a constant fog that isn't showing signs of going away.  my brain doesn't process things the way it used to. I often feel like giving up, I just haven't yet... this page makes me feel better and shows that I'm not alone, even when I feel very much alone.

I understand where you're coming from. It's like there's the "you" before the trauma & the you afterwards. I know. You're not alone, even when it feels that way. I've learned I need much more time to myself to nurture, let go, do things, help restore myself. It's hard for me to be social because I blank out sometimes, need to rest my brain so often. I've always believed in changing darkness to light, my whole life & this is no different. Let the light come.

Thank you for sharing your story Sean. My son suffered a TBI as a result of violence as well. It will be 8 years this month since he got hurt and it’s been tough for him. He “looks” like his normal self, but he is struggling. Not coping well. I’m not sure how to help him because he is in denial about his injury. Your description of what you are going through resonates with how I ‘think’ he must feel everyday.

I’m sorry that happened to you. I pray that things get better for you and my child.

This year is 20 years since my car accident. Tbi. Currently 43- disabled, do not drive. I feel like burden to my family. The old me is gone. Pictures and memories daily remind me. I’m a Social worker. I’m aware of what is going on, and what is expected to happen. Earlier this month I was diagnosed with dementia- another medication. This diagnosis is freaking me out.

I live with all the same symptoms & was struck by a van @ AGE 8 & Never had a clue to the injury that had occurred, always demonstrating signs & symptoms but was never diagnosed properly left me to discover my Condition @ mid 40's No clue that I could or would have brain TRAUMA!! I understand just what you mean by where did the you U knew!! Go & how do that person cone back?? I am feeling like I am in a fight 2 live!! & surly not 2 die!! & how hard I find it just too exist!! My Spouse has left & I clearly look back & See why!!(wow), Behavior out of CONTROL!! HURTING all those around!! Verbal PHYSICAL EMOTIONAL & Even self hurrying @ Times!! I survived it all to help someone else feel better just being alive!! I thank the father up above for each day I get to have & even in my pass behaviors I asked 4 forgiveness for I knew not what was WRONG in ME!! & ALLOWING me to know! I hope that even in the act to you & the forgiveness from you to them!! Can bring peace in your heart!! & may you be comforted in your journey living with A TBI

I had a stroke on August 31, 2021. During my 2 days in the hospital, I requested the help of a social worker. I was released from the hospital on September 2,2021. I have had numerous follow up appointments and other appointments as well. I have had home health people to come to my home. With all this interaction, I constantly asked for a social worker, for someone to help me navigate the aftermath of this illness. I have called enough numbers to fill a phone book and I'm still in the same boat. It wasn't until a few days ago that I found out that my injury was not referred to as a stroke, but as a brain injury. The lack of this knowledge was one of the reasons that I wanted a social worker to help me. Maybe now, I can find the help I need through the Office of ABI.

Imagine you are in a maze at dusk..trying to find your way and the walls continually change..now you have to start over and over..the frustration alone is more then you can handle..the the full on anger is automatic and in split second the adrenalin
Hit so hard..you are on the ride and can't get off..when it's over and back on earth
You now have to clean up the mess around who ever was around..you feel guilty but hopeless you can't control the hulk in your head..you are hopeless to stop it..fear of this turns to panic..the heavy coat is so heavy and you can't breathe.. no one knows the shit show of tbi...forever changed different...very small things before..a tiny road block stops you cold..the the frustration starts the whole issues at the Start of this revelation..over and over
I hope in some way this could help other victims who can't explain...its hell.....true story

Found myself here when doing some research on tbi. Skydive crash , head first, fractured neck and chest . 10 days in coma , 2 months between hospitals a rehab. I can so relate to people's comments . The hardest thing is loved ones not understanding the challenges we are facing. I guess each person's case is different . I'm used to thinking fast and mind always going, but after injury it takes a conscious effort with some things. I also remember how I was before as soon as I came to I immediately could tell things were different . My accident happened about 3 months ago. I'm waiting for things to get better mentally and was told it takes months . But I'm stubborn and impatient but am trying to learn patience :) but I find the thing I miss the most is feeling excited about something, even a fav food. Looking forward to physical pleasure also is missing. Even emotional pleasure . It has taken a toll on my relationship. Gf often reminds me of things that are lacking and I try to explain what I'm missing emotionally but she doesn't understand. You need many things to be there for someone. I know things are lacking mentally but have no control of how and if it comes back, it's like wishing you were smarter or something. Just doesn't work that way. So life is going through the day to day activities, walking, talking, eating sleeping but missing that zest the little things that make you happy and make you want to keep trying new things . On the plus side I can walk, talk , think (well I think anyways) :) still same stubborn ass I've always been. But I am persistent and refuse to bow down . At the end of the day people tell you to do this or that or just take it east, rest but they don't really understand the difficulties faced. Sometimes you are the only one that can effect your life , hence why I live alone , depressing or not its also life. Sometimes things happen and you have to deal with things. No one else can . I'll do my best and keep doing it . And try to stay optimistic but I do have to say the pandemic situation is a PiTA . Ironically I see people in worst shape mentally, probably on how this year has effected them, mentall imbalances do to social and mental activities. I hope everyone reading this or researching tbi finds some inter peace i think we could all use some .

I'm 6yrs out, car crash. It's hard I know, just this is a challenge. Vestibular and optic nerves damaged make it hard to read or write. Be easy on yourself and let what others say go in one ear and out the other. People will drive you crazy even when they mean well. Having a brain injury is one of those things you have to have to truly understand. Peolpe have no idea what life is like, we really take our brain for granted until it's not working right. I know you don't want to hear this, I didn't, you have to think in years not months. Yes everyone is different. I personally drove myself crazy in the beginning thinking in days or weeks and months. Family would ask me daily, are you better now, really. Every year I have been able to look back and see where I improved even if it was just my state of mind.
My prayers go out to everyone dealing with this, just know you are not alone, you can move forward. Remember brain injury folks are far stronger people.

Thank you for your last line. I don't feel strong in the least, I feel really stupid, slow, unfocused. But then I think of what I used o tell people (I work with people who have brain diseases/dementia & Alzheimer's) that their brains & minds are so absolutely beautiful. They are. I feel I need to let my ego go. Truly.

Trying to remember newer details feels like a pinball bumping around aimlessly in my head.