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

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.

When the cursor disappears from your mental computer screen.

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

An invisible thief.

Devastating. Exhausting. Widely misunderstood.

Scary. I look the same but I feel like someone else.

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

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

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

Thinking with speed bumps.

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.

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

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

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.

Scrambled egg between my ears.

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

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

Forgetfulness and a total personality change.

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.

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

Unpredictable and extremely misunderstood.

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

Trying to catch clouds in a windstorm.

Posted on BrainLine August 19, 2013.

Comments (429)

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.

I've been living like this for 10 years now. I feel so isolated and neglected. My family has never taken the time to even talk to my doctors or understand me as I am now. I used to be so smart. Now I'm lucky to be able to add 2 numbers together. In the beginning when everyone thought I would die my friends and family were right there. The last friend I had...my best friend at the time. ..told me in so many words that I was no longer a good friend back and haven't heard from her in over 6 years now. It would be so wonderful just to have someone hug me. I'm 47 and frightened that I may have to live another 20 yrs like this. Thanks so much for allowing me to vent here. This is the first time I have ever gotten the words out.

Hi everyone I'm not too good at tech stuff.

I was on my way to the store one day and from what I have been told since I don't remember anything I got hit over the head with a pipe in a robbery attempt. Woke up seven months later in a rehab and that was the start of my journey.

When I couldn't tie my shoes or put a shirt on the depression kicked in. I came to the point that I realized I would never be the same person I was. I'm just trying to go on with my life as this walking zombie and try to keep my head up. At least that's what I think I'm doing. I can't really figure anything else to do. I'm alone other than people like yourselves that let me know I'm not alone on this.


Hmm, I wonder if you're the same Carol whose comment on the auditory sensitivity page saved my psychological bacon about six weeks ago. If you are, THANK YOU.

I know digital and physical are two very different things, but:

Breathe in
Take it easy and keep the faith.
Breathe out
Take it easy and keep the faith.

I'm sorry your friend was so insensitive to the effects your brain injury had on you. A support group with people who have to deal with the aftermath of suffering from brain injury could be helpful. Having at least a therapist to get you started.

Omg! Could have me writing that. Difference is I’m coming up on 3 years. I also had a very good friend, one that was absolutely there for me in the acute stages- yet during a recent “outreach” I made to her, I got nothing. When I finally did hear from her, I was TRYING so hard to explain how much I was hurt. At least I was aware that my “tone” was not appropriate, and apologized in advance- explaining the end of a day is difficult for me- and I know I was sounding nasty but didn’t intend it. She quipped back- “Yes you are! And I’m done! We will talk tomorrow!” She hung up and tomorrow has never happened. My heart is broken, I feel horrific I hurt someone I love and counted on each other through so much trauma (not just my injury). Result? I’m being so withdrawn for fear of having similar reactions from others I love. No worries, they don’t reach out to me anyway. I just feel soo alone! Thanks for sharing your story. Yes, I have a TBI, no I’m not crazy- yet.....

I was in an anoxic coma for a month (total lack of oxygen to my brain). I had to learn how to walk, talk and the cognitive issues I still suffer from are highly variable. I had a high functioning job, was wee educated with a BA and MA, and a great life. After the brain injury, I essentially "died". My biggest challenge is the complete lack of support I get from my entire family. They are also not even willing to learn anything about the social, cognitive and physical challenges that I face. I have found it extremely difficult to find information on this subject I would be so grateful if anyone could give me any ideas. Thanks so much.

Dawn I get it. It is hard but I relate and I stand with you!

I know I have mashed potatoes for brains and do wish I could remember things as they were.

My brain is like a hornets nest....and somebody kicked it

i currently have a boyfriend who was in a serious motorcycle accident 5/172017 he was supposed to not survive its been 5 months later and he is walking , talking, and alive. but he has. TBI. he has been to a few rehabilitation centers in the past 4 months and has impoved. bottom line is he has TBI . i think he is ok but i know he is not. i have a hard time trying to understand this most of his damage is in the frontal lobe . i know in reality i lost him. but im trying to understand the new him. i think he knows me and loves me but in all reality with his short term memory that all can change in a matter of 10 min. i am so confused i dont know how to handle this or what to expect. i feel like im living in denial and all is ok but i know its not..i plan on being there for him no matter
what but i dont know how. i cant read his mind i know nothing about brain injuries i need help on learning more about this. its been very hard he doesnt remember me at times and is confused and i dont know how to help him. i try not to take it personally but it hurts me . i just need someone to help me understand the reality of this and i dont know how..any advise or anyone i can talk to please i would appreciate it.. im lost and i dont want to lose him.. i want to understand him.. ..ty ...i dont know if i can leave an email address first time on this i hope somone responds

Omg. This is me. Have a boyfriend for 10 years. I am dealing with almost identical situation and feeling same emotions. I know exactly how you feel. Its all so overwhelming for the family also. Sometimes I feel its a death while he is still living. I will surely keep you both in prayer. As that is all I have. Thank you for helping me see Im not alone either.

My boyfriend had an accident two weeks ago tomorrow. I know he has a long road ahead. At this point he does not know me or his dad. I've been trying to learn all I can. I wanna be there for him always but what if he never remembers me or does not love me either. I'm his biggest fan so what can I do that will benefit him the most? He been amazing and I wanna be just as amazing to him now. I'm scared. Any advice

Hi there
My partner of 16 yrs was involved in a 1 punch attack that resulted in 105 days in hosp/rehab..he had to learn to walk talk eat etc...its frontal lobe damage that is the hardest to live with...hus emotions and change in personality... my biggest advice to you is to find you new normal and build from there...in a way you have to grieve the person they were...we are 2 yrs since injury...best of luck to you both .

I am just like your boyfriend. I had a really bad motorcycle accident on September 4, 2017. They say I should have died but I didn’t. Instead, I got a TBI. Life is so hard for me and my family since the accident. I have a wife that tries really hard. Daily I have major issues and my wife is just there to help me. I realize her struggle and try hard to let her know how much I appreciate her.

For you, just be there for your boyfriend. Research and learn about TBI. Understand he will have major memory loss, not want to do things. It’s hard waking up one day and your life is forever changed. Everybody wants a break but you don’t get one.

Michelle I just read you post and it was like I was reading something that I could have written. 4 and half weeks ago my boyfriend and I were in a motorcycle accident I had minor injuries but not him...anyway he was in a com for 9 days and suffered a stroke while in the coma. His TBI affects his frontal lobe also. All the same things like you said with your boyfriend-short term memory loss I am so afraid that he will forget that he loves me or who he is now with theTBI won’t be in love with me. Everything is so emotionally difficult I am his biggest advocate I want to know everything I can to help him and be good to him and help him feel comfortable and hopefully happy once again.

After TBI, you are a computer of which the hard-drive is loaded with 5 TB of precious data, but the RAM is broken, and the Processor is also damaged and terribly slow slow slow slow slow ... Now do what with 5 TB of inaccessible date ?

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


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

im going through everything u just said now with my boyfriend..his family is trying to take care of the financial issues. but im going through hell emotionally ur not ranting .. im there and i dont know what to do... michelle

I'm a brain trauma survivor. I'm also a mom. He knows. He feels. Keep doing what you are doing, and find good support, rant if you have too, just like you did here. You are fighting the fight of his life.

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..

Almost 11yrs for me and I still feel like I woke up in the wrong body! Short term memory and can’t always remember what I am doing... I laugh at myself a lot. It’s better than crying tho my days start off battling with tears... frustration abounds constantly... stuttering comes n goes... no family support at all... my dad was understanding and patient and actually was supportive until cancer took him a little over a year ago. That sucked! I am glad he isn’t suffering and I miss him... he was actually the only one who understood...
I relate to everything I have read hear... staying positive is easier said than done...

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. ❤

thank you. ur the only message i read that is possiitive. the accident for my boyfriend is only been 4 months i have no idea whats going to happen next . so overwhelming to me. he has already been through the stages of TBI and i have no idea what that means .. please any advise is better then nothing..ll

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