
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
Comments (423)
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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 :'(
Anonymous replied on Permalink
Realizing something is different but unable to define it...
Anonymous replied on Permalink
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!
Anonymous replied on Permalink
Compare to someone updating your computer with a new and unexplained operating system without your permission.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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...
Anonymous replied on Permalink
Living each day with that looming feeling that you've forgotten something.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
Being an android. The only thing I'd really like to do is cry. But I don't have the ability anymore.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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...
Anonymous replied on Permalink
...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!).
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
Believing in yourself every moment of everyday.
Anonymous replied on Permalink
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...
Anonymous replied on Permalink
A long strange trip without a light at the end of the tunnel.
Anonymous replied on Permalink
The writer Larry McMurtry summed it up best for me, "It's like death, only you get to live"
Anonymous replied on Permalink
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
Anonymous replied on Permalink
"If only I could turn back time.." thoughts everytime. Jack. Mongolia
Anonymous replied on Permalink
I lost the life that I loved and hate the one I now live. Warren
Anonymous replied on Permalink
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).
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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?
IM THE TRUTH AND THE ANSWER TO STOPPING DRINKING AND DRIVING FROM TEENS TO ADULTS!!!!!!!!!!!!
https://www.facebook.com/pages/Billys-Blessed-Angels/500297750008058?fref=ts
please like this page for me and check it out
http://www.youtube.com/user/channel412WTF/videos
please subscribe to my channel
Anonymous replied on Permalink
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!
Anonymous replied on Permalink
Feeling like your best is a taste a away but never comes for every one progress another problem comes around.
Anonymous replied on Permalink
"Walking on eggs shells and not knowing what the current day or the next has to offer" Randy L Summers
Anonymous replied on Permalink
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...
Anonymous replied on Permalink
Definitely feels like im a senior sometimes......but im only 20. Its embarassing because i am actually pretty intelligent. ;/
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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...
Anonymous replied on Permalink
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
Anonymous replied on Permalink
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
Anonymous replied on Permalink
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
Anonymous replied on Permalink
the BEST WAY i can describe it... cut n dry... is like having a chalkboard n your head, only the slate is WIPED CLEAN :/
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
Brain injury is..... A bitch. Can't ever get away from it. Survivor 34 years.
Anonymous replied on Permalink
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!
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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
Pages