"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 (375)

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.

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.

Being an android. The only thing I'd really like to do is cry. But I don't have the ability anymore.

The past 27 plus months of my life have been about dealing with people who have amazing complexes, and they can only obtain parity by taking advantage of someone else.

I was 21 when it happened and then I can say that I am a survivor of a giant brain aneurysm.It`s a life changing experience and I learned that we cannot take everything for granted because we never know when our life can change by the events.I do appreciate little things those you cannot buy with money and I admit that I still in denial in some days and saying "WHY ME?".It`s painful and is  a  sort of sadness veil on my thoughts everyday ...copying and struggling in a continuous dance...appreciating and hating life at the same time,happy to be alive but struggling to accept it the new way

like running backwards up a sand-dune. To carry out the most basic tasks requires SO much more effort & energy than pre-mTBI. As my Specialist states, 'there's nothing MILD about an mTBI...' Of course, I look the same on the outside as I did before the assault & pre-mTBI so everybody expects me to function as I did before.

My version is this: TBI is like having a water hose to water the garden. The hose has so many holes in it you cant direct the water to the spout where you want it. The holes sprinkle enough water to mess up your clothes, your grip on the hose, and spray water in your car,your glasses and on the neighborhoods cat...all stuff you try to handle but every time you turn one of the other holes is spraying water somewhere else. Whenever you try to turn the hose, theres to much pressure and strength in the hose for you to wrestle it in the direction you need it. Stop one hole and the others rage, the hose spins out of control. You look like are playing in the water and breaking flowers irresponsibly. The only answer seems to turn the pressure completely off but unfortunately that means suicide,,.the knob is stuck on full blast.

A Nightmare! Almost 14 years since the car crash that I had survived, 7/15 on the Glasgow Comma Scale... lucky boy! I had a mental brake down 2 years ago and life has been hard, everyday is some kind of struggle. Stressed, memory problems, flashbacks, emotional, depression, anxiety, fear of life and no longer wanting to be here. Lost Mum 8 weeks ago so that is a hard time also...

...communication is the hardest thing to do...how do you tell someone something is wrong if you can't explain what it is? It's as though half of my body has been stuck in quicksand for 30 years (the top half!).

more reason to develop resillience, persistence, fierce self confidence AND humility. because guess whats there if you don't build that boat for yourself? a world that doesn't understand you, might even tell you you're making it up, and expects you to accomplish X Y and Z because you look fine. TBI is being dropped in a pool and told to learn how to float, then to swim.
 

Believing in yourself every moment of everyday.

Its a marriage that I never agreed to nor did I ever want its the nagging spouse that makes your good days bad and your bad days worse and will constantly remind you... Baby I will always be here for you...

A long strange trip without a light at the end of the tunnel.

The writer Larry McMurtry summed it up best for me, "It's like death, only you get to live"

Knowing how how to do something and being physically able to do it but not now you're mind wont let you anymore. Go from ripping apart heavy equipment one day to nauseated from the sound of an engine the next. You can remember what fun is and what normal is and all you want is that back and it just never seems to come. Marcus

"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!

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