"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 (442)

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.

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 .

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.

My name is Nancy Burnet. I experienced a traumatic brain injury April 29, 2016, just 2 months and 3 weeks after having aortic valve surgery due to complications caused by breast cancer treatment dating back to 1880 and 1981. An 89-year-old man driving a rental car at twilight literally turned a corner and hit me in the head; this could only be possible because I had stepped off the curb and turned my body a little to the left as I bent over to look at grocery items in my cart. His view may have been obstructed somewhat by a small tree, a bench and trash cans at the bus stop next to where I was. The fact that I was on plavix (a blood thinner) would greatly complicate my recovery. The man did take me to the nearest hospital a mere two blocks away and waited there in his car. From there I was taken by ambulance to the University of Pennsylvania Trauma Center in Philadelphia. After the ambulance arrived, I had absolutely no memory of the next six days I was in the trauma center. I spent approximately one month in one rehab and another month in another. My most significant concern after all this is that my balance is greatly impaired and I'm prone to falling; I was also left with an incontinence issue. Having diabetes has also added to my difficulties in life--a disease extremely common to my mother's side of the family. I also take humira for plaque psoriasis, a disease prevalent on my father's side of the family. Another complication resulting from breast cancer treatment in 1980-81 is lymphedema. It usually manifests itself 2-5, at the most 10 after surgery and radiation has been administered. Fortunately, it took 28 and 1/2 years to develop, and considering it is a difficult condition to manage at least I had all those years I didn't have to deal with the condition. An atrophied muscle in my back near my shoulder area due to a nerve being severed during the surgery for a mastectomy has limited the use of my right arm. Getting back to the brain injury: My recovery was remarkable, considering the bleeding on the brain that occurred due to being required to take plavix after the aortic valve replacement; the bleeding on the brain necessitated an emergency craniotomy surgery when I was admitted to the University of Pennsylvnia Trauma Center. The piece of skull was frozen then replaced under my scalp in I surgery in August of 2016. So this is my story. At 74 going on 75 I am living independently in an apartment for seniors. Because of my balance issues and the broken up pavements and streets, as well as high curbs, I take a four-wheeled walker which has space for groceries and other purchases with me when I walk outside. I also walk a mile and a half in my hallway (63 lengths of the hallway). I'm working on increasing that the 2 miles. I need to focus more attention on balance exercises presently; it difficult to balance myself on one leg at a time for more than 4 second--the goal is to be able to do that for 10 seconds.

Ma'am. I'm a 36 year old man originally from Pittsburgh but now reside in Columbus ohio. I just wanted to say, you are a very remarkable, very strong woman. Your story gave me a little push I needed lately. If you have Facebook you can type Jonathan Weaver Columbus Ohio. My picture is me on a red motorcycle. I hope you make your 2 mile mark. After reading your story, I know you will.

You are a role model! May I get as far & find a world I can be part of.

Trying to reconfigure life while dealing with new feelings and thoughts I can no longer control

Having a injured brain feels like the lights are on but no one is home..i look in the mirror and see my reflection it must be me but i dont feel like i used to or recognise my self anymore ..im not the same inside as i mite stil on the outside... annette..s..

I could not agree with you more. Mine happened 3 years ago and I am still doing the same exact thing. Wondering what is going on.

It’s a new way of life. You are a new you, but you never realize until you think about it. Everything feels normal, and you feel like everything is how it should be. But then you look back. You remember. You remember how things used to be. You remember how you would never get mad, or how you would rarely be outspoken. Then you look at yourself and it’s like looking at a stranger. There is the you before the accident, and the you after. Two you’s, and they’re sometimes night and day. You miss the old you, and you wonder why. Why? It’s not like you switched bodies with someone. It’s not like most people would notice a crazy difference. But you do. You notice, and it eats at you. The differences and changes. All of it. The fact that you’ll never be the same. The fact that you’ll never be 100%. It eats at you and it’s depressing. But it’s also just one more hurdle. One more mountain for you to climb. One more struggle. One more fight. To make yourself better. To show not just everyone else, but yourself that it doesn’t matter. That the new you is not worse. That you can learn to live as a new you. To leave your mark. To show everyone you’re not someone to pity. To show them that that 5% doesn’t define you, YOU do.

I totally get this... I'm a TBI survivor of 22 years and still deal with this... I feel your pain... I wished I didn't have this from a severe car accident due to a boyfriend that did pot behind the wheel... it's hard to pick up the pieces and move on however we can do this. We will get there together.

Very well said!!! I'm not quite able to put it into words yet... A contstant struggle it definitely is... It's a whole "NEW" normal for sure... Its great to read from the optimisic point of view... I still am an optimist and I am very grateful that I am :) thank you for your time. If anyone knows of any online support groups, please let me know...It may always be a struggle, however, I do know... With persistence, I will learn new ways and recovery will continue and the "NEW" normal will be all that it is meant to be... For now, no worries and keep smiling :)

Everything is hard for my mind. Things I thought of automatically now take a lot of time.

Like my legs are made of clubs. You probably don’t even think about your legs when you’re walking. Mine are big and clumsy.

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