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

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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

I hope you don’t express those feelings to him or give him any sense that him living with a brain injury has ruined your life. Knowing that your own life is ruined is hard enough, but thinking that surviving has made it worse for others is indescribable. I’ve been suicidal for 16yrs because I feel bad for my father…wrongly thinking that he’d be happier if I died while I was still competent, capable and had my whole life in front of me instead of being in many ways like a child at 35.

Marijuana makes my moods stable, stimuli less irritating and allows me to function. Perhaps it would aide him as well. Medical doctors don’t know everything in a world where $ and archaic laws dictate research.

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

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

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

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

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

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

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

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

WHO am I? WHERE am I? WHAT am I?

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

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

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

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

I died 446 days ago.   

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

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

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

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

I used to believe in God.


Not anymore.  

It hasn't always been this way. 

\im sorry u feel that way i just lost my boyfriend in a serious accident 5 months ago and was told never to breathe eat or walk again. he is doing all of that but yes... he has tramatic brain injury . but u know what ? i wont give up on him.. every message i read so far was negative. i believe he will recover so as i do for you or anyone dealing with this... i have not read once a positive remark to any of this... i will not give up unlike half the messages i read tonite for the first time i was looking for help to help adjust to this new life and all i read is negativity . i wont go that route. i believe in micacles and u will never see me post anything negative what so ever. i hope and wish the best for anybody is has been going through this . i

Well that’s great that you support your boyfriend and are there for him but these people are describing there pain and what there life is like compared to there old one I also have a TBI and I think it’s easier to lose an arm or maybe a leg and still have a pretty full life with the technology out there today but there’s not much help to fix a brain losing who you were and hearing thoughts and the inner voice in your head change into what feels like a new person with less thinking power is horrible it’s like changing from windows pc you used your whole life with 1gig speed internet of today to an iMac on dial up from the 1990s and try to get something accomplished

My husband was seriously assaulted in December 2016. The ambulance took over half an hour to arrive as the police advised not to approach as the offender has a history with the department. I was on the scene holding my husband's head and bits together; completely covered in his blood. The ambulance officers asked if I would like to travel with them; very considerate and honest gesture. I chose to have a shower and get my own way to the hospital. Once I had arrived at the hospital the head sister in the emergency ward was amazing, then I was sent to a private room.... The next person I saw was pastoral care? She explained who she was and asked if I need her help, "Yes could you please find me a box of tissues as you have interrupted me praying to our family Angels". The tissues finally arrived after some time, I politely asked this lady to leave (very short version). Next was the Neurosurgeon, he walks in introduced himself and told me frankly it does not look good, I don't know if he will make it. My response "You are a Neurosurgeon?" "Yes" was his response. My next question was "Do you believe in your abilities and do you have the best team"? The surgeons face lightened as I told him "I have faith in you and your team do your job". It has been a long daily process, so please have faith in yourself, know each and everyone has the ability to survive an ABI (Acquired Brain Injury). Just to let you all know, I the wife of a survivor has also been abandoned by family and lifelong friends. Please see your smile in the mirror daily, love, care, share your experiences, never feel alone!

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

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

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

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


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

Scapegoat for everything or the butt of the joke