"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 (359)

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.    

Fear - fear of people hurting you, stealing from you, harming you in many ways, so you cut yourself off or limit the number of people you allow in to try to limit the betrayal.

All these comments have literally brought tears to my eyes! I was involved in a multiple roll-over (x6) MVA 6 years ago. The ER I was sent to is a level one trauma center. They CT'd my head and told me I had a concussion, and within an hour after the diagnosis, had chosen to release me as long as I had someone to "watch" me. My mother (also in healthcare) threw a fit, stating that we lived more than 2 hours from this facility, and more than 45 minutes from the closest acute care center. They chose to keep me as an 24 hr observation patient, so I stayed the night. The next day, as I was literally being wheeled out the door to go home, I was administered a neuro exam by the nurse, and failed miserably, yet was still discharged. For SIX MONTHS I had difficulty speaking, as if the word was on the tip of my tongue, then it was gone. I couldn't focus on anything, and my memory was a mess. Not to mention, debilitating headaches that would last for days. Not one time was I ever re-checked post discharge, or scanned again for the presence of a bleed, or active swelling. It was over a month before I could go back to work, and that was pushing it. I tried to explain to my Dr. I did not feel "ready", I felt "off". Like I was in a fog, just as you all describe. However, I was pushed to get back to work....IN HEALTH CARE. It has been 6 years, and some things have improved, but I still "word search", find it difficult to focus, or multitask. I am overwhelmed easily, and have mood swings, anger issues, and severe cluster and migraine headaches, some of which causes temporary hearing loss in the affected side, and facial numbness. Sometimes I have difficulty focusing when I read, I see words that either aren't there, or words entirely differently than what is printed on the page.  I get angry because I feel my injury was not taken seriously, then cry because I feel like no one understands. Reading these comments have made me feel like I am not alone, and my heart breaks for all you who have taken the time to share your experiences. Thank you for sharing.....

My brain injury didn't ask me if I wanted it. Since it took residence I'd like to think I have been given a do-over. I am no longer driven by my career, I have time for you now. I will always call and I will always hold the door open if you are coming in behind me. I have the time to be nicer than you were when I was in your way when I was trying to figure out my wheelchair. Life is what I can make of it, and I am choosing to be a really kind & patient person. Kathleen Bartl

Regressing in age. She may be 19 but it feels like im taking care of a 10 year old. That has breakdowns and mood swings.

Living with an invisible disability that not even your own physicians or specialists are willing to see. 

We are one of a kind, meaning, there is no one with the same brain and in turn no two brain injuries are the same.

Check out my website: www.chadfrancour.com to see my inspirational story after a TBI.

Brain injury is like being trapped in space, with no ground below and darkness ahead- just floating around.   

After reading all these comments of others experiences I realize i am so not alone.... after my injury it was like i was in a life that wasn't mine anymore.. I was there but i didn't feel like i belonged .. I moved away from this area and started over again... 20 yrs later i returned and that same feeling is starting all over again.. it's like i'm living in a parallel world that i don't belong in.

Was considered somewhat intelligent before I got hurt, and I still have flashes of being able to understand,but am always second guessing myself, I speak before I think, (and have no control over this behavior) I am constantly removing my comments on fb, because I just blurt out with my keyboard..It's embarrassing.

My brother was a lawyer. After the brain injury he can't talk. In the beginning he tried I convince the doctor to take the trak out. I began to give him water. Everything was slowly progressing then his facility close and he's in a place where the people don't care he regressed. .. I wish I was rich I'd be able to give him better treatment. It hurts....

I feel like a ghost and I can see the real world and people living there lives. But I just cant be part of it no matter how hard I try. I now realize how a fish must feel in a fish bowl.

Not all there, trapped , confused, brain won't answer blank,

Living one life and living a new one after and sad to know new limits

Scaling a wall without suction.  You can see it, touch it, know what needs to be done but you just can't get it all together.  It's almost as if you're an unexplainable magician.  You start the trick with multiple objects and you concoct this awesome looking piece but neither you nor anyone else knows how you got to the finished product.

missing who you used to be, while you don't remember who that was

missing friends and the ability to think and to talk right

A LARGE PUZZLE where a number of those pieces are Broken, a few of the pieces are Disfigured and some of the pieces are Missing. I found the key (if possible) was to 'locate' all of the pieces, fix the damaged ones, adhere them together and then paint over all of them - to get some consistency. Everything has changed - but nothing has to remain where it is at .... God Willing.  The Environments in which we find ourselves is KEY.  Levels of recovery will vary, but pursue the best options available – if they can be figured out!.  Life has taken a drastic nosedive, but a Knowledgeable, Understanding and Supportive Environment will make life so much easier.  Survivors need to hang in there and move forward.

what do u do when you are 4 yrs old and get hit by a car. years go by and now u are 45 and u still have unanswered questions. real question. whats my diagnosis? who is responsible? who pays? will i always feel like im responsible for the way i am now? whats next?

like losing yourself yet feeling like you can still be him/her if just ___. like trying to claw your way out of a deep ditch and always failing. Nothing's good enough anymore and my best doesn't meet other's standards and expectations so it leaves me feeling ashamed, frustrated, inadequate, and angry. The list goes on and on...

Like a word on the tip of your tongue,.... it's a thought on the tip of your brain. Lost and without a timeline.

having thisTBI is like trying to see through frosted glass you can't tell what you see

It's the cat that stole my tongue.

I have tbi too and dealing with this problem is very devastating. I'm 27yrs old and I can't enjoy life, or understand why it happened to me, antisocial, can't be still or relax, my hair keeps falling out, my eyes are bad, I think about other stuff that I have no control over, and I put all of my trust in GOD. because when I was down, He picked me up

In a daze when I get up and some days I come out. But some days I don't. When too much going on around me I freak out . Larry

Stripped to the core. No identity ...Cut the cord. Restart

Lost in a fog, constantly dazed and confused, never knowing who u can honestly trust or rely on, ALONE

 It is what it is and there is no going back. Forward is the way to move and slow it will be and cumbersome it will be and repetitious it will be and realize, this isn't going to be easy...but think, life before TBI wasn't perfection, far from it...remember, perfection is imperfection...begin anew!!! Life has slowed down immeasurably...enjoy the new you...throw out the past memories...and realize you've been given a new life...from big to small...is the calibration that has descended to fulfill your destiny...you can change and be in tune with the semantics of life and love thyself or feel pity for thyself and what rotten luck has fallen upon thee...the former is the choice of a warrior, the latter is the choice of the disgruntled...who are YOU???

Art C.

My brain injury has robbed me of my life. I am like a puzzle with a lot of missing pieces, Easily confused, not able to multi task any longer. Cooking is a serious challenge and I am afraid to go out on my own now even to the store.

Loud noises kill my head as I suffer with non stop headaches. I am found I am nasty, Very moody, yet I feel very empty inside. 

I am off balance and fall into things. My memory is shot. I have very very limited short term memory and immediate memory is challenging as well.

I am a new person and I don`t want to be me. I want to be who I was as this new person is not a nice person. I have NO friends and thus have become reclusive. It is easier than dealing with people who will never understand me.

My memory is less and it is very frustrating. Family and friends who want to understand and help which is great, do not really understand. Its confusing, huge amount of sadness and depression and anxiety. Headaches. The one thing I wish for is more information when you leave hospital on recovery and what to expect. I floundered around finding my own information which is very sad.

Its like the real you died and this really old person took over your body you cant focus, no energy, headaches will not go away, migraines... I want me back im not happy, before I was very happy, I feel like I'm doomed, I cant except me now. I want to wake up and be me again, nobody knows what we go thru, they are clueless. But I'm trying hard to deal with my tbi problems but I feel like I just cant fix it why try. I have a beautiful family that makes me want to live, I want to be happy again, I miss me so much. I loved Life, God will see me thru i pray.

Like a prison w/ invisible walls, You lose everything. Family, friends, and yourself. because the past is taken and you are left to stand alone in the now, with no hope of a future. ATV accident August 16, 2009 lost all my memory from them back. Lost all my family due to disbelief . 

March of 2013 my life changed forever.  I was stopped at a red light and was hit from behind by another vehicle.  Because I was turned speaking to my passenger I have a TBI.  My profession was to speak publicly to large groups of people throughout the US.  I appeared on many national media arenas.  I now stutter from time to time and it seems like it happens at the worst times.  I see words I want to say but another comes out in my conversation. It is very difficult to accept the new me. I can't remember from day to day important facts and events.  Again in April of this year a woman ran a red light, again I turned and was struck in the side of my vehicle.  Most progress which was little seems to have disappeared.  There are days that depression is so severe one has to ask is a life like this worth it.  Everyday I fear the stuttering will consume part of my day.  I do my best to see the bright light however when I'm told this could be for life the bright light turns into a slow flicker.

I thank God that my life was spared on the evening on 10/6. I was awake for days before they sedated me. I was not fully awake. I didn't really wake up fully until pockets of 3 weeks later. I was then moved to another Rehab hospital. I made dramatic improvements. I was a worn out professional when the accident took place. I was wearing thankfully a helmet. I broken my jaw and face. Slowly recovering. Moved to Extra Strength Tylenol 5 weeks. I am healing. Thank God for his intervention, healings, and regaining of ground. They said I would forget everything, but they were wrong. I am though slowly becoming myself. I am going through mood changes and low sugar bouts. Bones healed but still working on Scapula and range of motion. I am organizing myself. Cleaning up the pile up of paper, and getting back. Stress, rushing, and my ability to scratch my head and pat my stomach not back yet. I can see again and my eyes are stronger. So very grateful for this and for sweating. Sweat glands took a rest. So I am on the road to full recovery. I am smarter. I am a spiritual person, pray, read the Word, and know that we are never alone. I struggle with prejudice, ill-remarks, and lack of understanding of others. I need to get past this. They aren't perfect. Nor am I. Staying on the road to recovery. Testing for my brain power taking place next month. Totally intimidated, but know that I have to do this. I have multiple college degrees so you would think it would be easy for me, but it isn't. I will continue to pray, trust in my redeemer, and provision of healing. Stay strong. 

six years ago i was assaulted in a bar whereby my forehead was slammed into a door frame. when i went to the emergency room, the doctor just gave me stitches and sent me on my way without any future appointments to check on the condition of my brain. six years ago i was a happy go-lucky guy who was very jolly and enthusiastic, also i was very easily motivated. now it seems that i am emotionless. my friends and family feel as if i am a totally different person encased in another's body. it seems that way even to me at times. i am at my wits end or whatever can be constituted as wits with my injury. i feel the need for someone in my life.

All of these wonderfully helpful and relieving  comments from people who live with TBI are comforting to me in that I now know why I have these "all over the place" feelings.  Forty eight years ago I was assaulted with a shovel handle that was broken over my head.  Back in 1966 when you went to the emergency room, they took an x-ray and if you didn't have a fractured skull, they sent you home.  Still in High School, I found I couldn't read anymore. Oh, I could read the words alright....but by the time I got to the fourth or fifth word it the sentence....I had already forgotten what the first  word was.  Sound familiar anyone?  My life has been tough.  My wife and children's life even tougher.  It eats at me.  Not until the NFL players started telling their stories of forgetfulness, rage, poor decision making, emotional  rollercoastering, continual depression, alcohol or drug use for relief, etc., did I finally make the connection.  I just knew there was something more going on than just being reckless in my behavior.  Although that's a great sign that you are in the loop.  Crying easily is another good one.  I could always cry at the tip of a hat!  I could cry from a tragic scenario to a 16 year old prodigy singing on American Idol.  I've always been kind of a mess upstairs.  More than a few broken toys in the attic! I could never figure out what it was. The bad feelings about myself from all of these years of this stuff is what really brings me to the bottom and ultimately to the brink. That's where the rage comes from.  Gives a whole new meaning to the word frustrated, am I right?  Suicide was always just a thought I would blow off because I probably leaned toward hope.  Hope that things would get better somehow change and everything would work out and be ok.  Besides, suicide was a thing that other people did, not me. Not until I was so painted in a corner that it made absolutely perfect sense to go that route and free the one's in my family the burden having me to deal with on a daily basis.  Thankfully the pills didn't work the way I planned but look what I did and how far it got.  How did it get like this...how did all of this happen.  I now know how and why it's the way it is.  It's the traumatic and or chronic brain injury that makes it what it is. Now the big question...Can anything be done to fix it?  It's always good to talk about it, I guess.  That seems to work, sometimes.  I really don't know the answer.  One thing I do know.  At least I do know now what it is.  I think we must all blaze our own trail to finding ways that works the best for us because we are all so unique with our symptoms from this.  It's very early in the game with recognition of all the effects from brain injury. I'm glad about the breakthrough with the NFL bringing to light the after effects from injury.  I'm hopeful the future generations of people to come with this infliction will benefit from the studies and science to make better the silent side effects from the trauma that we now, today, try to endure on a daily basis. You folks who are on this site because you are looking for answers, don't give up on yourself like I almost did.  Keep trying, keep hoping, do the leg work and try to continually find some help somewhere, anywhere.  If it doesn't work, try something else.  Just keep trying.  Who knows, we might get lucky and finally find some peace. We are all in this together as a small group of warriors. It gives me some kind of good feeling from not being alone in this, that gives me some kind of a power that I can finally be heard on how and why I feel the way I do. Good luck to you my comrades. My thoughts are with you. Share your valuable thoughts and feelings with the rest of us.  We can learn so much from each other about things we thought were only our misgivings. Jump in the boat and grab an oar.  We are all most certainly in this together.  Hang tough, smile when you sometimes don't even feel like it. Stick with the things that make you happy or give you peace. May the force be with you.  Rick, Jersey Shore.  P.S. It made me feel good to write this!  See, some things do work.

I received a severe concussion at work (State Prison). A few months later my son-in-law, an IT at a college,  suffered a heart attack.  He can't figure out why he was able to go back to work after 6 weeks, but I'm still recovering after 8 months.

I ws in a car accident last year.  ONE of the things that hapened is that my head swelled up, giving me SEVERE headaches.  My forehead hurts, as well as the back of my head.  It feels like a band around my head.  A MRI was done, and an angio of my head and neck with and without dye.  I am told that I did not bleed; however, I still experience the same pressure. The headaches are relentless.This is an emotional rollercoster. My family does not understand. I have done some strange social things.  I'm not social. And I cry easily.

misinterpreted by a lot of people, which partially leads to frustration felt about this. It's hard to get used to my cognizant disabilities now compared to never having them before, and the list can go on and on.  

There is no need in writing things down to remember..because I forget to remember I wrote them down..it totally leaves my mind once its done :'(

Realizing something is different but unable to define it...

I can only share with both victims and family members to be optimistic.  As TBI victims we are incredibly fragile but strong and resilient as well.  I suffered a severe TBI in August of 2012.  I tell others part of me died that day, but other parts of me flourished.  Family and survivors stay strong and stay determined.  Time helps victims like I but patience and understanding does as well!

Compare to someone updating your computer with a new and unexplained operating system without your permission.

A gift in disguise...I got a new fulfilling life, one that I embrace with love and acceptance.  It took me many years to see it this way.  

like trying to row a boat with only one hand/arm.  I'm still going somewhere ... it's just usually in circles.  Everyone else travels from point A to point B.   I hit every letter in the alphabet.

It,s harder than it looks, I,M on a Mountain right now, it,s a challenge, i,m going well, but its just the base of the Mountain, I climb higher,it gets more difficult, BUT I cannot get off this MOUNTAIN. ever...

Living each day with that looming feeling that you've forgotten something.

like the whole world is comprised of window dressing (I think that's the right term, a real term - the old me would know). i see a store, a house, a drawer, a book and from the outside they appear perfectly normal; But when I open the door to the house or the store, there's nothing inside.  When I open a book, the pages are blank.  When I open a drawer, it's empty.  Everything serves as  a prop in the one woman play for which I never auditioned.

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