Traumatic Brain Injury Is ...

BrainLine
Brain Injury Is...

TBI 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

Often like being thrown back into childhood. New tasks are difficult to learn and sometimes scary. Living in a thick fog

Its worst lasting effect for me has been my problems with short-term memory. I HAVE to use a memo pad. Of course just HOW MANY phone numbers can YOU remember off the top of ur head? But then too, there are things like what did I come to this store I'm in to GET???

I want that word I know it I try hard exhausted the reality and discomfort days later

Isolating

The loss of a normal, everyday life. A move into a new, challenging, redeveloping  life that causes tears and appreciation of every morning...

Like being a child again. I went from straight A about to graduate adult college senior who just landed my dream job to a month or two in and in danger of not keeping my job or completing/passing. I can't take light, cant sing songs on the radio, stutter, and struggle to get words out or do my work. And when I make myself work i an nauseous, dizzy, and my brain hurts for days. A dangerous traffic felon that shouldn't have had his license returned stole everything i have given up years to give my child and in an instant with an illegal left in front of oncoming traffic.

I do not have the brain injury but a year and a half ago my son fell down some stairs and hit his head on the cement floor at the bottom. I can't even begin to imagine what he is going thru as he has severe cognitive issues. He can answer questions you ask and is doing great in physio walking ,bending ,transfers from bed and wheelchair and is eating food again which one doctor told us that we should just find a good nursing home to stick him in because he would never do any of this stuff ever again but as a father it's very disheartening and sometimes the feeling of not being able to help him and to see my son going thru this is very very overwhelming and saddens me. Also all the unanswered questions of how the end result will be because of the individuality of every TBI is also very frustrating. Some days it's hard to cope without a support system. And bills don't pay themselves so u can't stop work and little to no government support a parent or loved one basically is stuck dealing with this on their own. Sorry for ranting and I know my story is the story of thousands but blowing off some steam kinda helps

I had a car accident on February 2nd and I don't remember the accident and a lot of things after it. I was attending school at the time. I have lost my short term memory, my confidence, and my family does not understand. I wish I had a way to connect all the pieces. The headaches and the vision problems are the worst. Not to mention the light sensitivity. I really do hope that one day we will all find a way to cure this problem. I used to be a very confident hair stylist. Now I am just a person who stays in the dark. 

Waking up a different person. And no matter how much you want to, you know you'll never be the same.

Hard to live with, it is a <-hidden-> disability and it doesn't matter that the person with the hidden disability has it, they just perceive me as a (bitch) or rude...

I slipped on ice and hit my head in two spots and was knocked out cold. Not sure how long I lay between my front garden and car on the coldest day of the year in the dark. No one spotted me ... I finally came to and crawled on my hands and knees up the stairs, across the porch and into my house. I called my husband who came right home, put ice on the bleeds and drove me to the hospital. I ended up with a brain bleed, severe concussion and a torn left rotary cuff. The bleed dissipated, I had to walk with a cane for months and then the long road to recovery began. I looked normal but knew I wasn't right and most looked at me seeing I looked normal expected the same or more because they couldn't see anything wrong. It has been three years now and so much has happened. The accident brought my daughter closer to me and my son further away. I lost my job, got a new one, had to fight for my father's well being, then lost him at 89 yrs. of age. Shoulder nearly froze, therapy 3x weekly, memory loss, hearing loss, certain processes that used to come easy were now very frustrating and I repeat myself constantly and sometimes more than once in minutes. Continued trips back and forth to the specialist, MRIs etc. then I became diabetic and tore my MCL in my right knee and have no idea when or how that happened. More therapy, a custom brace on order and each night I would go home and crash. Too much time on the computer pretty much shut me down daily so I was little help to the hubby and our relationship suffered. I got my diabetes under control am off the pills and only now am I able to really understand what I have lost. All TBIs are different, some more severe than others. Just recently I met someone who looks fantastic and he suffered a TBI 1.5 yrs ago, was in the hospital twice as long as I was and he only lost his sense of smell. I also lost my photography knowledge, my great love, a wonderful hobby and something I enjoyed my whole life. Family and friends are not as understanding of me and my limitations and some are cruel and many are having less to do with me. I have to be on guard, not share, and not be myself and I hate it. They don't believe me when I say I look fine but I am not 100% and never will be because this is what I see and feel right now. I am lucky to be here and am trying to cope each and every day and just want to be loved and remembered for the person I was and accepted for the person I now through patience and understanding.

Six months into the recovery. The unexpected is what frustrates me the most. What will I be able to recover and what do I need to accept as my new normal? 

Its like being in a different country. Everything has changed. You don't always know what they are saying but you know they are talking to you or about you. You don't remember where home is and can't get there. So you just wonder.

like having my cognitive radar turned off all the time. When I want to interact with someone, I struggle to focus as hard as I can to process what they are saying. I understand, but eventually my mind drifts off and I battle to concentrate on the interaction again. I forget some or a lot of what we discussed.

Beyond words....I have lost it all and work diligently to get it all back regardless.  One valuable lesson for me ~ who my friends truly are.

~ Beth S.

Memory taker, life changer & makes you a "new you" that don't like. Beyond words.  I lost everything.... 53 years old and starting from scratch..

Being dropped into the wrong body

like trying to drive a car without a steering wheel

like a puppeteer controlling you, and you are aware of it happening but unable to tell them to stop.

...that you could be having an AWESOME day and that tomorrow ... you already know that you won't remember it ...

I'm a spouse of a TBI husband. Grateful for the insight you have given me. My heart aches for all of you. This will help me be more aware of why he acts the way he does at times and I will be more patient knowing he isn't meaning to do those things he would of never done before. Blessings to you all and in time things to be better. ❤

You know all the answers to the questions, but they are just out of reach and when you try to stretch to grab them it feels like your brain is being wrung out like a towel.

I feel like I lost my son the night he got beaten up. The young man he is now is aggressive and violent. I cry everyday for him. Its ruined our lives

like having the same breakfast every morning for the rest of your life.  It's always the one specific thing you don't like!  ~  Jennifer (Jeni) Stokley

This has been my scenario since I was stricken with Hydrocephalus, at five months of age and little was known then, I am 55 years of age now. I have struggled with the detriment of with little, to any support system at all,ever !!!!

Having this injury no one understands, not even yourself is frustrating because you look normal and no one understands what is going on inside!  You can't see a heart attack victim, why can't people realize this is the same (not being able to see) and you would change it in a second if you could

I spent many years pretending / no convincing myself that I do not have a TBI but after reading all the definitions of how this affect people it has made me realize that   not only do I actually do have a TBI but I am actually very lucky as my TBI has never allowed me to stop doing whatever I wanted to. I understand over the years, it is 13 years since I suffered a fractured skull due to being hit by a car, I have adapted my life to not be fearful of things. If you want to do something then do it, don't let people tell you you can't cos ......... Surviving makes you brave, sometime's a little inappropriate, but lets face it even people without a brain injury can be in appropriate occasionally. So it's the bravery aspect that needs focusing on not the poor me. And that's my take on TBI :-)

The police hurt me and violated my rights. I can't think. That is what I wanted to convey to an attorney following an abrupt and violent arrest in my own home in a premeditated arrest. It is called rotational acceleration TBI. I also was in medical shock and traumatized, and my right wrist was swollen from handcuffs. I was confused by everyone talking at me and not letting me talk. It felt like I was under general anesthesia that didn't lift. I was the victim of a setup and told the FBI takes people like you out of the country to Guam. The police state in orange county, California is real. I was a paralegal, and haven't worked in 36 months. The attorneys were all insane, and had the parties confused. Can you imagine being brain damaged, and talking to an attorney who doesn't know who the defendant is? That is what was happening to me. My brain short-circuited, the wires to my brain were clipped, and every time I raised my voice, I had an epileptic brain seizure. I processed information at 2%. I also disassociated from the trauma, on top of TBI. I told my friend I am having trouble de-fragging my brain, a computer term where all the data is scattered on the computer disk, and one performs disk cleanup to defrag, line up the data, so I can finish disbarring 3 attorneys. Complete insanity is what I experienced, from everyone. And no one can relate to what I'm saying. I was the most fragile,delicate person on earth and no one was listening, because I couldn't assert myself. I was reduced to a 5 year old at the mercy of others, trusting they would help me. Rodney King, also a victim of police brutality, also had brain damage. When he said, 'Can't we all just get along', that was indicia of brain damage, an innocent-like child's response, because executive functioning was disrupted. It destroyed my life, and I was amnesiatic for 2 years. My heart aches for everyone who has posted here, because I know no one wants to hear about it. -ANNE

Like demons are controlling my emotions on overdrive...they have driven away my whole family and are draining the love of my life, who is all i have left, but will probably leave because he can't handle this over and over and over.  I can rationalize at times and see how i ruin everything, but then i get so easily overwhelmed and flooded with uncontrollable emotion and anxiety it ruins the things most precious to me.  I come across as a liar and disrespectful when it could not be further from the truth.  I cannot drop an arguement, I am not understood.  I do not even understand myself.  I miss the old me.  I feel like an abandoned child that thrown in a pit i can't get out of.  I am frustrated, lost lonely, forgetful, hopeless.  I can't cope.  Bad things keep happening.  Everyday i am walking on eggshells because i am worried how my anxiety will affect others and ruin me and what i will mess up.  My spirit is broken and I am breaking my spouses...the harder i try, the more i fail.  I am like the boy who cries wolf to everyone, except they can't see the problem which is much larger than a wolf.  Dr's and specialists just listen and send me on my way.  I am afraid after 5 years that i will one day lose everything and be homeless.  My heart jumps and skips beats.  I feel i am dying a slow and painful death and people think i am crazy.  I am on a merry go round that i can't get off of that should be called a hell go round as everyone else enjoys life and can deal with adversity.  I want to be there so badly but the more i try the more i fail and hurt others without wanting to.  Breathing is an effort.  Ceasing to exist seems like the only way to peace.  I have 2 little pugs who are always there for me, even they can tell i am a mess, but they still stand by me.  Life is passing by, I am so embarrassed and make the same mistakes over and over, so i am not taken seriously anymore.  I was in a bad car crash and roll over several times 5 years ago.  I look "normal" but I am not.  I feel i am overlooked in the medical system, falling through the cracks.  I used to be a nurse, a snow boarder, a surfer, a traveler, played hockey, volleyball, wake boarder, full of life with goals, hopes, and dreams...now life is like a glass timer with sand dropping grain by grain...each grain represents the anticipation of the constant struggle,heart ache, battle and frustration of failing when i am trying harder than ever to move forward.  Eventually the sand runs out, just like those closest to me have slipped away....I am down to my last grain of sand...my spouse...my everything...my life line, but I am hurting him and it is not fair.  I love him deeply but cant seem to get things right.  I am shouting but no one can hear any more...it is like being stuck in a horror movie that will not end.  I am scared, lonely, ashamed, and embarrassed.  I wish i could snap out of it.  I will not live without my spouse, but it seems he has had it with living with me.  I have tried to reach out to God in total desperation, but do not feel a connection of any sort.  I have gone on and on and on and could keep going, but if anyone has read this far, i think i have made my point.  Many comments have here have made me cry.  So sorry to all those struggling.  Wish i had words of wisdom

Like I have pop rocks going off in my head that I cant control. I relearn birthdays I once knew and am thankful for life, God and my family and that my loved ones are patient and kind.

Thank you all for your comments.  I have been given confirmation and some sense of relief.  What I will take with me is "Discover your new self".  It is who I am now.  Not less just different. I am not alone.

WHO am I? WHERE am I? WHAT am I?

My traumatic brain injury is a jenga tower, i keep building myself up just to fall down to where i started again. I have dealt with it my whole life, but even the "normal" days bring anxiety and fear, every other day brings shame and sadness from lack of normal friendships for 13 years, in middle school the other kids noticed i was "different" so i was an outcast, and still feel that way. The epilepsy that started a few years back makes things more stressful. Lack of vision in my right eye from the injury haunts me daily.

Alienation from the very people you love the most.   Wishing they understood the very things that are debilitating to you and feeling as if they don't know what your problem is so they all just go away, only every once in a while reach out to you to find out what you are up to and why you haven't risen to the person you once were again leaving you isolated alone homeless in many instances with no stability no one to understand just why you can't get it together.  Why?  They ask themselves?  If I were you I would have..... or if it were me I would.......  She is so hard headed..... you need to look over here, you can't if you don't do this first..... You are capable of it, we all have issues, if you only knew what I have been through you aren't the only one.... 

"I don't know why me and if I could fix it I would" I say to myself.   I just want to be loved for being me like I used to.  Have shelter like I used to and have a way to describe what has happened or is happening to me where you can understand.  The worst part is I have realized that what I say to people evidently has run every single person in my life out of my life, but it wasn't what I meant to say, I said what I thought would represent what I meant but when they say what they heard it isn't what I intended for them to hear.  "Help me" is all I wanted them to hear most of the time, and that "I am sorry they don't understand" and that "I miss them" and "I love them" just like I used to, I'm just sorry they don't feel that I do, or that I am trying as hard as I should be.

I too had a brain injury and although things have been different and may not remember many things, I trust in God because His ways are always perfect. I forgot many things including moments that I know must've been painful for me but those memories are no longer there. Yes, I may not memorize certain things but as long as I remember that He gave me my life back, I'm grateful and He was the one who saved me. I was dead. So don't worry, friend because He still believes in you.

I died 446 days ago.   

I lost the life that I loved.  I lost the person I should be. 

I keep reminding myself that it hasn't always been this way.

But I realize now, that, it will always be this way.    

I wish I could turn back time, even for just a second, just to feel something real again - to sense time, to feel laughter, to be able to remember.  

I used to believe in God.

But

Not anymore.  

It hasn't always been this way. 

Thinking I'm the same person, why can't I still do the same things.

I had a stroke four months ago. I lost the use of my right arm. With lots of work I am regaining the arm and slowly getting control of my fingers. What surprises me is how exhausted I get what I do different activities because the brain is having to rewire itself. I can relate to most of the comments on this page, I am fortunate that my case is not so severe but I can empathize with others who are having a lot harder time than I. it will take a lot more work a lot more therapy and a lot more patience before I get back to "normal".

It's like living life in a condom; there is a barrier there keeping you away from the fullness of existence and from the big you that you used to be. But mindfulness has helped me accept that I cannot do the big things, but I can fully enjoy the little things that used to just pass me by....

Like loosing you mental sense of gravity and floating around with stop start signs in daily routines. If you cope you do it with swagger but you know its not right and you not the same inside. When you cant cope you hide.

devastating!

I'm like a jellyfish on the beach, little Timmy poking it with a stick "eww gross, what is it?" Everybody telling him to stop and leave it alone but just watching to see what will happen.

Scapegoat for everything or the butt of the joke

I have come a long way since my TBI, but it has changed my entire life and left me feeling so alone. I am very intelligent and can do many things. However,when I do tell others I have had a brain injury and I honestly dont understand something, they look at me like i am crazy. Whats even worse is when I try to explain, the best I can, where I am coming from or how MY thought process works....I am told, "There is nothing wrong with you. Its you, you just dont want to (whatever). I dont believe that brain injury crap." My problem is that I have learned how to adapt into society and mask things to try and lead a normal life again but emotionally i feel like i am dying at times. JUST BECAUSE YOU CAN NOT SEE IT, DOES NOT MEAN THAT IT IS NOT REAL!!! I just want to be able to live life and to be happy on the inside and stop just maintaining from day to day. 

To all of you who are living with TBI such as myself... Keep reading and learning and maybe something will click from time to time, that will help you to understand yourself a little better. 

Thanks for reading my words and hope it helped someone.

Renee

It has been five years of having family and friends, people I have known and trusted for years, define me by my diagnosis.  It seems to be much easier for others to assume that I am now a dangerous, negative, crazy person than to remember that I am someone they know and love.  Everyone connected to a person who has had a TBI is affected by it.  It seems that just hearing about the symptoms of TBI is enough to set off a lot of negativity and hostility in friends and family.

DJ

Like taking one of those tests... If you could live anywhere where would it be a) country b) city c) by water ect... Or what, where first date it's now like taking it for two people not all answers are the same. The new me answers differently from the old me

Brain injury is when you are running in all directions at the same time.

Memory taker, life changer & makes you a "new you" that don't like.

A thief is a good definition, even if it is incomplete. My brain injury stopped my higher brain functioning immediately. At the same time. it reduced many learned and born-with physical attributes to nearly zero. Autonomic body controls were disrupted and became uncontrolled. I was paralyzed, but later worked diligently to be able to continue as a seemingly normal adult. And, I became ignorant. I had worked twenty-four years to get my education and training when this happened. I was out of the Air Force for over one year. I was highly trained. College was a review after my extensive training and work with Avionics equipment in the USAF. Now, my muscular deficits and mental inability retain me from pursuing my career in Avionics and Electronics. I know because I have tried with some mild success. But, that success was fleeting. I became incompetent. I survived his car crash, but I entered a whole new life. Who I was becoming died, but I am who is left. This incarnation is not fun. I have struggled since 1983, but I became officially disabled after working several different jobs. I had a very good resume that I could not live up to. There is so much more, but my ability to communicate has been lessened. Now, I live day to day. Happiness is nearly forgotten. It is who I have become.    

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