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

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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.
—Barbara

When the cursor disappears from your mental computer screen.
—Dave

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

An invisible thief.
—Lisa

Devastating. Exhausting. Widely misunderstood.
—Jules

Scary. I look the same but I feel like someone else.
—Ann-Michel

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

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

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

Thinking with speed bumps.
—John

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.
—Alison

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

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

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.
—Christy

Scrambled egg between my ears.
—Graham

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

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

Forgetfulness and a total personality change.
—Dana

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.
—Sonia

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

Unpredictable and extremely misunderstood.
—Ronda

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

Trying to catch clouds in a windstorm.
—Mary

Posted on BrainLine August 19, 2013.

Comments (396)

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.

"If only I could turn back time.." thoughts everytime. Jack. Mongolia

I lost the life that I loved and hate the one I now live. Warren

 Only survivor. It's being surprised by the words I say sometimes...I'll use a "big" word and think, how did I come up with that? Do I even remember what that word means? I used to know it--pre TBI--but it's usually like a Chinese word to me now. Except it will pop out on my "good" cognition days...and now, post TBI, I can barely remember the word and wonder what overturned file cabinet in my brain just righted itself for a second...(Received my TBI,  when a 10 ton water truck pummeled into our vehicle 30 years ago).

My injury occurred when I was 20 years old. Like trying to decide whether to sue or not, I decided to focus (excuse the pun) on recovery and a creating a positive future for myself. 25 years later, I have learnt to live with it. Those around me help me to 'ignore' it and I have had a high function type lifestyle, but at the cost of my confidence, hidden confusion and memory loss. Have other women noticed a direct link with premenstrual fluid build up ? Has anyone done any studies referencing TBI with the menstrual cycle ? After about 12 years (and children) the effects were lessened to the point that there was no futher relationship between TBI and the premenstrual cycle. Curious about others experiences. 

When I disappear for awhile, I like to tell my family and friends I was on vacation. I just don't know where I went or who I went there with. Karen

To me it's like being lost in my own head. I don't know where I"ve been and I don"t know where I'm going. It's like being caught in a swamp and I can't get out. A terrible depression comes with it.

Amazing and I love who I am now. 100% new me that isnt easy but simple.

Here I am! I stand at the door and knock. If anyone hears my voice and opens the door, I will come in and eat with him, and he with me.
Revelation 3:20

Can you tell everyone about me?

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Like looking in a mirror and seeing someone else.

It is like trying to walk straight through a strong tornado.

Brain injury is living a life that you do not even know, being replaced by a new you!

Feeling like your best is a taste a away but never comes for every one progress another problem comes around.

"Walking on eggs shells and not knowing what the current day or the next has to offer" Randy L Summers

I just learned my TBI is cause for how I have felt (struggled) for the past 25 years.  No one told me...  until now.  My mind spins.  I think very fast (like brainstorming), and then become exhausted and have great difficulty making decisions.  

Disconnected, isolated, misunderstood, "so close, yet so far away", alternate universe (on the outside, looking in), 2-second delay, apathetic, forget to remember to look at lists I write, forget goals, useless, unworthy, etc...

Definitely feels like im a senior sometimes......but im only 20. Its embarassing because i am actually pretty intelligent. ;/

What I always tell people about my memory since the TBI is: "I am like a computer with a broken processor, the memory is there, the indexing is poor." - Jeffrey B.

All I can think of is its like my life is an etch a sketch where I shake it and then I have a fresh start.  I feel lucky each new day because I know I am alive.  Do I wish it never happened ?  Of course I do but I'm realistic and this is my life now.  And the most important thing is I have life!  Its a journey each new day...

it is more frustrating than anything i've done or been through! i'm recovering but so slowly it's depressing

PLEASE SOMEONE HELP ME!!  a 23 yr. old living in pittsburgh,PA

Being lost in my mind, not knowing the words I need, obsessing so I dont forget not being able to recall what the man looks like who hit me so hard he cracked my picture of him. I want to remember what he looks like so I can find the bastard & run him over (rageful).Everything is slowed down now, my head hurts more, my neck my back, I am confused & dizzy.

Its irritating & scarey

Frustrating not remembering even the greatest moments such as the birth of my daughter , starting a conversation and forget what I was talking about somewhere in it , maddening ringing like a gun fired next to my ear . Emotional wreck most of the time , fumbling & stumbling isn't funny , feels like I fell asleep in a rotating dryer , movements require intense concentration , angry alot . I don't look at pictures cause I really don't want to know how I used to be ....it hurts too much . But all in all I'm determined to do some things , it (tbi) took alot but I won't let it have it all. Hit in Feb.2012

the BEST WAY i can describe it... cut n dry... is like having a chalkboard n your head, only the slate is WIPED CLEAN :/

I have been living with my brain injury since I was 6 years old when I was hit in the head by the batter and knocked unconscious .  At the age of 19 I fell off a forty foot cliff while fighting a fire in the California Conservation Corp.  When I finally landed in the hospital they said I had a TBI and Hydroencephalitis.  They gave me a VP Shunt to help drain off all the extra fluid on my brain.  Which helped with the headaches.  But it is not a permanent solution and has been repaired or replaced some 14 times.

Brain injury is..... A bitch. Can't ever get away from it. Survivor 34 years.

Remembering who I used to be and not remembering me now.  Frustrated, angry, sad, confused.  More than anything deeply saddened that I don't remember my son growing up.  Thankful that family gave me a camera for pictures of him.  Truly angry that the person that did this to me only got a $100 ticket and I almost died!  So much that I don't remember.  Started writing a book about it but can't remember sequences of things.  Just so frustrating because I can't get the care I need!

i remember my days in the hospital some 35 years ago and i went to a park in OKC just to get fresh air and change of scenery.  I jogged after a Frisbee wrong thing to do.  i felt i was in a glass cage and i did not know how to get out.  Who was this new person inside my body and mind?  I was strong 17 year old that could do anything i wanted and communicating was a breeze  not any longer.  I facilitate a brain injury support group with my work and i used the illustration of brain injury is like a Rubik's cube the colors represent ones ability to be whole and the jumbled colors are a survivors current ability to deal with a ever changing world.  Praise God when two of the same colors align.

VERY FRUSTRATING!!  I can't find words, they're like files all screwed up.  I remember through repetition but nobody's repeating just getting upset!  Had a hard time accepting the new me and letting go of the old me.  I fought hard to get my life back.  I'm now trying to find where I fit in with my limitations.  I'm afraid of the world.  Everyone expects me to be normal.  I don't feel normal whatever that is anymore.  No one relates to  the TBI. They don't relate problems with TBI. I tried working.  Put in 60 hr wks making up.  Burnt out. 

 Bobbie1988

I was blown up by a truck tire in 1976 i have gone down hill ever since i was married in 1985 i was divorced in 2009 because my wife could not deal with my brain injury i am all alone i feel like no one cares i struggle to survive i can not remember things i have good moods & bad moods i am angry & don't no why I say things i dont mean & hurt others i dont mean to it just happens there are times i know what want i want to say & but i cant get the words out. this life is hell on earth. Desmond

Like being robbed of your identity and purpose in life but every single day you get up and try so hard to be even half of what you were....and Never getting there. 

Memories are shadows observed from afar.

TBI survival is having your automatic transmission magically changed while you sleep into standard transmission. You start at the beginning learning to shift & clutch in EVERY activity whether drinking water without choking or sitting up in bed. Unlike an infant who, with practice, goes into automatic transmission you are stuck in standard transmission forever

A lifelong commitment of love, caring, support and patience for the loved child who was in a deep, dark coma for so long. Upon wakening, this child is not the same one who was in an accident, who was away for so long in a place that we will never understand. It is a lifelong commitment to God for returning this child to me regardless of the  changes that occured during this illness. A lifetime of understanding and nuturing. Guidance,  grief, acceptance and denial. Happiness, anger.  Wonder and hope.  He is with me and for that I thank God. He was my little boy, and now he is my wonderful young man.

It's like trying to think clearly and live my life

in the middle of a Hurricane

I feel like I'm never going to be the same. I look in the mirror and I see me but, it's not me. I don't think the same. I don't feel the same. It is so hard just to get out of bed everyday. I use to love being around people and family. Now I cry when I'm in a crowd of people that are my family. But I feel like i don't  know them anymore. It's a sad and scary place. I would give anything to have my life back. I guess I need to start excepting that this is my new life. The stories i have been reading don't give me much hope that I will be returning to a life that I once knew.  PJM

Feeling like Alice, falling down the rabbit hole.

Like my brain/mind is broken, placed in a wheelchair, no room to maneuver in my head, yet with no arms and legs to move it around to figure it out...and no one behind to help push.

when your computer gets a virus.  Starts acting funny.  It does inexplicable things. 

Traumatic Brain Injury is the hardest struggle one can ever have! It puts us in a fight with ourselves, a fight that cannot be won!

I'm the wife of a TBI patient.  He was blow up in Iraq.  Seeing him struggle from the outsiders point of view is like watching him stand inside one of those giant snow globs that people put on their lawn at Christmas.  He is standing in the middle and all the little pieces flying around are his memories.  He tried his best to grab and hold on to as many as possible.  But as soon as he reaches out and grabs more the others are lost.  Everyday is a new day.  Or like all our none injured people have memories in folders in order in a filing cabinet.  All his memories are in one folder and out of order and almost impossible to even attempt to fix. 

Like trying to do everything knee deep in mud

Thinking and talking through thick gumbo mud, sometimes walls pop up to block the way.

Mine causes brain fog and memory loss. I get confused when too much is given me at a time. Sensory overload.

The lights are on and, YES, someone is home, it just takes a little longer to respond. Kat ;)

Living in a fog with a buzz. So lonely as people cant accept you are someone else. Standing on the sidelines of life wanting to be included but at the same time afraid of the crowds. Days the depression is so black and heavy that breathing is a chore.

Sometimes it is hard to believe that something so minor, fast, and random still causes such a disruption to my daily life.  I can function, but the changes are subtle.  I am not the person I was, and my colleagues think I am making it all up. So, I would say, TBI is an injury that can cause incredible self-doubt, which leads to that anxiety...  Which has led me to an even greater compassion to everyone suffering the effects of this invisible injury.  

Like playing golf... alone...with every shot going towards the sun and playing with a grass colored ball... It will be a tough and VERY long round with lots of people watching, waiting and annoyed at your slow pace!!!

Feeling like I am looking from the outside in at my life. Moving more slowly and deliberately. Double checking. Questioning old routines. But somehow it is not a sadder place. It is not a stressful place. From my new outside view I just see  areas for improvement in like how I used to react to emotional circumstances.  I just ask myself, with chuckle."Why do you do that?" "Don't do it that anymore". 

Is it weird I am just taking my month or so of recovery from a mild concussion to remodel myself a bit? When I found myself again I saw that me needed a little fixin' up. 

So far, my family doesn't freak out as long as we can talk about what their perceptions and concerns are and I can explain what I am feeling to them. But my not being my "old self" is disorienting to them.

it's like trying to climb Mount Everest with ice skates on WTF? How about when you feel like you should put yourself in a time out because of the ignorant comments or come back that you just said not purposely to people in your life?...these uncontrolabel moments are crazy!

After 29 years of being a tbj survivor, I have know gained the knowledge that I can only consentrate on ome thing at a time and hope that I will be able to finish what I started doing before l get either to tired, frustrated, bored , angry, or just to worn out trying to do what ever it is.

Life is changed forever. A true test of character and determination to live life in slow motion. Feeling isolated from others, but getting to know myself and God better. It can be depressing at first, then you realize how glad you are to be alive and decide to live and enjoy the life you have, now. I'm still the same person, just slower. I can't take anything for granted. I have to work for my health and quality of life to be restored as much as possible. Walking and dancing make me feel alive. Eating healthy food and resting helps me stay calm and restores me from the stresses of each day. I know how to encourage others who are suffering. Life is still beautiful.

A TBI is llike knowing what to do, but doing it takes soooooo long. I have been on the roller coaster for about 42yrs. and it gets better at times, then there are times when it is like it yesteryear. I am just grateful to be alive. I still need help at time.

.....like mashed potatoes. 
.....like being in a constant fog.
.....frustrating; embarrassing; fatiguing...
.....did i already do that?
.....what was i going to do???
.....you mean, we went down this road/visited this place already?
.....what's your name again?
.....it's my turn to make dinner.....again????? (a week later)
.....trying to remember something you KNOW is in your head but have no way of pulling it out because you can't find it........
.....wanting all the noise to stop!!!!!
.....wanting the world to stop spinning....
.....wanting to sleep, just to sleep.....
.....wanting it to be the day BEFORE the accident, when life was "normal".....
.....working through your breaks/into your lunchtime/after hours because you were too slow during the day
.....having conversations with others who think that you're understanding but in your head it's really like the voice on the other end of the phone in a Charlie Brown cartoon

Living with a TBI is like being thrown into a raging sea. Incessantly fighting with all your might to stay afloat. Every once in a while a calm comes, and you know the fight is worth fighting.

Like the mirror from Harry Potter, you see things in the reflection of perfection. Then you look down at yourself and realize that it will never happen for a multitude of reasons.

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