"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.

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.

But

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.

devastating!

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

I have come a long way since my TBI, but it has changed my entire life and left me feeling so alone. I am very intelligent and can do many things. However,when I do tell others I have had a brain injury and I honestly dont understand something, they look at me like i am crazy. Whats even worse is when I try to explain, the best I can, where I am coming from or how MY thought process works....I am told, "There is nothing wrong with you. Its you, you just dont want to (whatever). I dont believe that brain injury crap." My problem is that I have learned how to adapt into society and mask things to try and lead a normal life again but emotionally i feel like i am dying at times. JUST BECAUSE YOU CAN NOT SEE IT, DOES NOT MEAN THAT IT IS NOT REAL!!! I just want to be able to live life and to be happy on the inside and stop just maintaining from day to day. 

To all of you who are living with TBI such as myself... Keep reading and learning and maybe something will click from time to time, that will help you to understand yourself a little better. 

Thanks for reading my words and hope it helped someone.

Renee

It has been five years of having family and friends, people I have known and trusted for years, define me by my diagnosis.  It seems to be much easier for others to assume that I am now a dangerous, negative, crazy person than to remember that I am someone they know and love.  Everyone connected to a person who has had a TBI is affected by it.  It seems that just hearing about the symptoms of TBI is enough to set off a lot of negativity and hostility in friends and family.

DJ

Like taking one of those tests... If you could live anywhere where would it be a) country b) city c) by water ect... Or what, where first date it's now like taking it for two people not all answers are the same. The new me answers differently from the old me

Brain injury is when you are running in all directions at the same time.

Memory taker, life changer & makes you a "new you" that don't like.

A thief is a good definition, even if it is incomplete. My brain injury stopped my higher brain functioning immediately. At the same time. it reduced many learned and born-with physical attributes to nearly zero. Autonomic body controls were disrupted and became uncontrolled. I was paralyzed, but later worked diligently to be able to continue as a seemingly normal adult. And, I became ignorant. I had worked twenty-four years to get my education and training when this happened. I was out of the Air Force for over one year. I was highly trained. College was a review after my extensive training and work with Avionics equipment in the USAF. Now, my muscular deficits and mental inability retain me from pursuing my career in Avionics and Electronics. I know because I have tried with some mild success. But, that success was fleeting. I became incompetent. I survived his car crash, but I entered a whole new life. Who I was becoming died, but I am who is left. This incarnation is not fun. I have struggled since 1983, but I became officially disabled after working several different jobs. I had a very good resume that I could not live up to. There is so much more, but my ability to communicate has been lessened. Now, I live day to day. Happiness is nearly forgotten. It is who I have become.    

I get it more than you’ll ever know.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

missing friends and the ability to think and to talk right

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

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

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

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

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

It's the cat that stole my tongue.

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

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

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

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

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

Art C.

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

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

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

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

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

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

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

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