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

BrainLine
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 (460)

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.

Like being a long tailed cat in a room full of rocking chairs every day.

It feels like the “ghost of your own self” in your head trying to live its life in your place, even though you’re still alive.
The you that you’ve always known, just isn’t surfacing the same way anymore…. And everything around you is imploding and exploding, and you can’t do anything to stop it, because the you that you use to know and rely on, isn’t there anymore!

Like phyllo dough. Dozens of layers. You’re not sure if they will stick or separate, then the sheet is cut, stacked on top, you get lost, and the pastry is sent in for cooking.

I feel like the elevator can't reach the top floor or my lights or off & I am home!! I have mentally left the building! & how can you explain!! What u can't COMPREHEND!!!

it's been 3 years since I got hurt

my tbi has been a huge problem in my life. it's not something I want people to know about me, I don't want them to see me like this because I'm not comfortable with the new me.  I'm constantly trying to get back to the old me, it's been a battle. I took four solid punches to the back of the head at a house of a dude who I thought was my friend. I was held down and had a plastic bag ziptied over my neck. I was made to believe I would not be going home, that my body would never be found. I can't remember getting out of there. I can remember the people punching me having second thoughts on following through with their original intention. I remember staggering and falling against a cable guardrail trying to get back home. I remember passing out on my bathroom floor and missing work the next day. I remember waking up  confused and looking in the mirror realizing that something was missing/changed. I used to smile alot and it has been hard to do but I am getting it back.  I have a sensitivity to light, I get tremors, I get night terrors, or don't sleep, I lose balance sometimes. I can get some pretty major headaches that I never had before. I've had my fair share of thoughts of loneliness, feeling dumb and worthless, sadness.  I have felt lost when trying to explain to people that my brain is just chaotic and jumps to the worst conclusions. i get close with people and then I distance myself, because I don't know how to proceed
I realize I have a problem and I find solutions as I go. it's not easy opening up to people about a condition I acquired through violence. I want so badly to be able to revert to my original settings.  It's like a constant fog that isn't showing signs of going away.  my brain doesn't process things the way it used to. I often feel like giving up, I just haven't yet... this page makes me feel better and shows that I'm not alone, even when I feel very much alone.

Thank you for sharing your story Sean. My son suffered a TBI as a result of violence as well. It will be 8 years this month since he got hurt and it’s been tough for him. He “looks” like his normal self, but he is struggling. Not coping well. I’m not sure how to help him because he is in denial about his injury. Your description of what you are going through resonates with how I ‘think’ he must feel everyday.

I’m sorry that happened to you. I pray that things get better for you and my child.

This year is 20 years since my car accident. Tbi. Currently 43- disabled, do not drive. I feel like burden to my family. The old me is gone. Pictures and memories daily remind me. I’m a Social worker. I’m aware of what is going on, and what is expected to happen. Earlier this month I was diagnosed with dementia- another medication. This diagnosis is freaking me out.

I live with all the same symptoms & was struck by a van @ AGE 8 & Never had a clue to the injury that had occurred, always demonstrating signs & symptoms but was never diagnosed properly left me to discover my Condition @ mid 40's No clue that I could or would have brain TRAUMA!! I understand just what you mean by where did the you U knew!! Go & how do that person cone back?? I am feeling like I am in a fight 2 live!! & surly not 2 die!! & how hard I find it just too exist!! My Spouse has left & I clearly look back & See why!!(wow), Behavior out of CONTROL!! HURTING all those around!! Verbal PHYSICAL EMOTIONAL & Even self hurrying @ Times!! I survived it all to help someone else feel better just being alive!! I thank the father up above for each day I get to have & even in my pass behaviors I asked 4 forgiveness for I knew not what was WRONG in ME!! & ALLOWING me to know! I hope that even in the act to you & the forgiveness from you to them!! Can bring peace in your heart!! & may you be comforted in your journey living with A TBI

I had a stroke on August 31, 2021. During my 2 days in the hospital, I requested the help of a social worker. I was released from the hospital on September 2,2021. I have had numerous follow up appointments and other appointments as well. I have had home health people to come to my home. With all this interaction, I constantly asked for a social worker, for someone to help me navigate the aftermath of this illness. I have called enough numbers to fill a phone book and I'm still in the same boat. It wasn't until a few days ago that I found out that my injury was not referred to as a stroke, but as a brain injury. The lack of this knowledge was one of the reasons that I wanted a social worker to help me. Maybe now, I can find the help I need through the Office of ABI.

Imagine you are in a maze at dusk..trying to find your way and the walls continually change..now you have to start over and over..the frustration alone is more then you can handle..the the full on anger is automatic and in split second the adrenalin
Hit so hard..you are on the ride and can't get off..when it's over and back on earth
You now have to clean up the mess around who ever was around..you feel guilty but hopeless you can't control the hulk in your head..you are hopeless to stop it..fear of this turns to panic..the heavy coat is so heavy and you can't breathe.. no one knows the shit show of tbi...forever changed different...very small things before..a tiny road block stops you cold..the the frustration starts the whole issues at the Start of this revelation..over and over
I hope in some way this could help other victims who can't explain...its hell.....true story

Found myself here when doing some research on tbi. Skydive crash , head first, fractured neck and chest . 10 days in coma , 2 months between hospitals a rehab. I can so relate to people's comments . The hardest thing is loved ones not understanding the challenges we are facing. I guess each person's case is different . I'm used to thinking fast and mind always going, but after injury it takes a conscious effort with some things. I also remember how I was before as soon as I came to I immediately could tell things were different . My accident happened about 3 months ago. I'm waiting for things to get better mentally and was told it takes months . But I'm stubborn and impatient but am trying to learn patience :) but I find the thing I miss the most is feeling excited about something, even a fav food. Looking forward to physical pleasure also is missing. Even emotional pleasure . It has taken a toll on my relationship. Gf often reminds me of things that are lacking and I try to explain what I'm missing emotionally but she doesn't understand. You need many things to be there for someone. I know things are lacking mentally but have no control of how and if it comes back, it's like wishing you were smarter or something. Just doesn't work that way. So life is going through the day to day activities, walking, talking, eating sleeping but missing that zest the little things that make you happy and make you want to keep trying new things . On the plus side I can walk, talk , think (well I think anyways) :) still same stubborn ass I've always been. But I am persistent and refuse to bow down . At the end of the day people tell you to do this or that or just take it east, rest but they don't really understand the difficulties faced. Sometimes you are the only one that can effect your life , hence why I live alone , depressing or not its also life. Sometimes things happen and you have to deal with things. No one else can . I'll do my best and keep doing it . And try to stay optimistic but I do have to say the pandemic situation is a PiTA . Ironically I see people in worst shape mentally, probably on how this year has effected them, mentall imbalances do to social and mental activities. I hope everyone reading this or researching tbi finds some inter peace i think we could all use some .

I'm 6yrs out, car crash. It's hard I know, just this is a challenge. Vestibular and optic nerves damaged make it hard to read or write. Be easy on yourself and let what others say go in one ear and out the other. People will drive you crazy even when they mean well. Having a brain injury is one of those things you have to have to truly understand. Peolpe have no idea what life is like, we really take our brain for granted until it's not working right. I know you don't want to hear this, I didn't, you have to think in years not months. Yes everyone is different. I personally drove myself crazy in the beginning thinking in days or weeks and months. Family would ask me daily, are you better now, really. Every year I have been able to look back and see where I improved even if it was just my state of mind.
My prayers go out to everyone dealing with this, just know you are not alone, you can move forward. Remember brain injury folks are far stronger people.

Trying to remember newer details feels like a pinball bumping around aimlessly in my head.

It’s like having your wings clipped without your permission
— Brian

Its like living in a constant state of anxiety, sometimes panic. Its like wanting to be normal and have normal communication with others but no matter what you do you can't control your words and emotions. Feeling out of control all the time. And needing so much sleep per day there's no room to live a normal life.

It’s like I’m respawning in a video game that I never chose to play. I remember a fair few long term memories of the person I was before my ABI. But I’m not that same person with those capabilities anymore. I’m only a shell of who I was before. It doesn’t make me a bad version of myself but I still don’t like the changed person I am now...

My filing system (aka my brain ) is broken. Information comes in but is often filed in the wrong places under the wrong name or only a piece of it gets filed and in a totally unrelated section. I feel like everyone else has a computer and I’m still doing the filing by hand. The info i need is in there somewhere but finding and retrieving it is a nightmare process there is no order only chaos. The hardest part is that you know that you know something it seems familiar it’s right on the edge of your thoughts but because it wasn’t properly filed away it remains beyond your grasp for hours sometimes days until you either find the missing files or give up looking. I know I am a different person than the 16 yr old before the brain injury- it’s so hard to be someone you’re not my reality always feels a bit off like I’m in a play I’m a character performing my role but it’s not really my life I can be really good very convincing that I am the character I portray at times and other times I just feel homesick for something or someone that’s always beyond my grasp

It's like being stuck in a blizzard, but it never ends. It just keeps going and going.
~ Dylan

It may have appeared that an inanimate object was taking the lead in ruining my life but having flat-out refused to give up that modicum of control, I draw back the power from a red light and move forward, by my own choosing.
--Murray Dunlap

its like I am a flip phone and everyone else is a smart phone!

I hate myself or the person that's here now . Things fall out of my memory. The feeling of worthless when I let someone down because something that suspost to be important to me and them just slips out and they think I'm doing it on purpose. I want to be normal again but gets farther away with every second of that clicks by .

I know how you feel I am 13 years out from my 3 brain surgeries.When I started rehab they told me it takes the average person about 18 months and they are good. I was nowhere near good at 18 months or 13 years. Please do not hate anyone especially yourself. You deserve love if you find it hard to make human friends try a dog or cat. Their love is unconditional. 2 things helped me regain a decent amount of my brain speed, I had lost my peripheral vision when my brain swelled and messed with my eyes and my peripheral vision was down to 0%. One year later with the help of brainhq.com I passed my peripheral vision test with 98%. My eye doctor said he never saw this kind of improvement. He did not believe me when I told it was software that improved my vision. He told me that it had to be something else. It wasn't.

I am not joking with you. The first is to have a catch with someone. With a tennis ball stand close to the other person and back and forth with the ball. Catching a ball is a very complicated thing to do especially when you are little farther away and you must follow the ball into your hands. Do this at least 3 times a week and take a walk as often as possible.

The next thing is a great brain training product. It is the best of its kind on the market. if you want it to work it you must commit to doing it at least 5 days a week 30 minutes minimum. Your head may hurt after your session.But its worth it. The brain is a muscle and this program is a very strenuous in the beginning but if you do it 5 or 6 days a week and I think you will see a difference in 6 weeks or less. The web site is. brainhq.com I do not know what it costs now but it is worth it. I know because whenever I stop I go backwards and I am back hard at work. I feel very good about myself as I progress. It is an amazing product. Good Luck. Ira

I'm not the one that has the brain injury, but my boyfriend does. He was on drugs for a long time and finally got off them. He unfortunately relapse once and he overdosed. Which that was the reason for the brain injury. But I've been reading up on it. And he keeps saying that people are trying to hurt him, not to mention me!! It's very heartbreaking, because I love him very much. He gets so angry in a split second, and says that he doesn't care if I get hurt, thing's like that. I really need to know if this is normal? If someone can please email me and help. Give me some pointers that would be wonderful. Thank you!

Trying to get through a storm in my head

The fear of not knowing what you forgot.

I love that!

Like building a house with no foundation. Jason

Missing the person you were and never being that same person ( personality, strength and same wisdom) ever again. The simplest thing can be a very big challenge. Memories are locked away you want them back. Like watching a movie you know youve seen before but not remembering the dynamics

Trying to catch my breath 24/7

Involved in a serious motorcycle accident. The ONE thing I do to make every problem in my life temporarily dissappear. The one thing I did. I am lost. I am scared. Not being able to describe it is one of the scariest parts. It's like that feeling before the most important job interview of your life, mixed with watching someone hold a knife to your child's throat mixed with your stomach turning when the roller coaster your on drops down a huge hill. But feeling it as soon as your eyes open in the morning, while getting ready for work, while working then coming home knowing tomorrow isn't going to be better. It's been two years but my memory makes me feel like it was last week.

So I also have the same problem with time and space. My accidents were in 2013 and 15. My life has changed. You are not alone. I wish I could talk with those who would understand. Like you my Brother.

I just wanted you to know from a person with a plate in my head that you are not alone but drugs and alcohol are not the path to a satisfying lifestyle.

It’s like taking a walk down a familiar road that you’ve been down before and everything is brand new. Everything is hard, everything. Marty

being dropped into another person's life

I was a loving husband and a proud grandparent. now my family never know who will walk out of the darkened room I now hide in alone, the sullen stranger, the screaming fool, or the one I hate most the crying baby

Living in a strangers body for the rest of your life while relearning everything all over again.

Angry, frustrated, emotional in shock. What happened? It's been 3 months since my brain infection abscess surgery. I can walk and talk but feel dead inside

It's like a tornado of information spinning overhead,things start to slow down,make sense then the switch is turned off and
I realize I have no idea what is happening

Ear pain and agitation and ear pain

A devastating loss of self, a stranger in my own body, feeling like I’m walking through a muddy fog

It's exactly that. You are not alone. I feel the exact same way.

It’s like living in a constant state of blackout . Jo

I've learned that while at work compiling, recalling, juxtaposing data, and executing action plans to keep ideas and data swirling around in a thought vortex to have access to in formation without attempting to force retrieving memory, which causes debilitating pain with a tbi. Hope it benefits anyone.

Some days its like a nightmare you cant wake up from.

Like A misunderstood child living in an Adults body Somedays just wanting to curl up & Not have to talk or think, Feeling Mentally exhausted & Drained unable to speak up as no-one ever Truly understands they just Judge & Corner You to sadness - Leaving you suffering Inside as its all too much :( written by Marie M

I send you a hug in the Spirit from across the miles...

Constantly battling an invisible enemy, always feeling under attack but mostly I’m not in control of myself a maniac is

Now my brain is like a old pinball machine.
Only this one has 4 sets of flippers, 9 bumpers and 3 active balls constantly.

I have Tbi from an assault. A lot of people pretend they actually care about me and really don’t. It took a lot for me to forgive everyone who has hurt me mentally verbally physically and many different ways. It took a lot for me to bounce back. I stay away from toxic people and it seems my boundaries have been disrespected. I love me. I pray to God everyday that he keeps toxic people away from me. And just because I didn’t go through having surgery for having Tbi I went through a lot of hurtful things. People think it’s okay and funny to try to relate to me when they’re not me. I’m happy to be in a healthier relationship even though sometimes I feel like I’m just a burden to him. My self independency I don’t need anyone trying to manipulate me at all. Being a Survivor of Tbi is who I am. I don’t like if anyone pry in my life at all. I have migraines every now and then from me having Tbi. That hurts a lot. I don’t trust no psychiatrist or psychologist either because they caused me a lot of anguish. So, I do my best everyday after having had Tbi in 2013. People seem to believe that Tbi and Ptsd only comes from being in the military but that’s false. I felt like no one cared enough to even stop and think themselves how much I hurted. But, I’m very grateful I have someone now who loves me past my Tbi and trauma. I’m a happy owner of my chihuahua cincere who’s been a lot of support for me. I do my best not to give up on praying that my life will get better. So to all of us who has trauma and or Tbi we are loved.

It took all of what I could find to smile about. Took my life without me.

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