"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.

i remember my days in the hospital some 35 years ago and i went to a park in OKC just to get fresh air and change of scenery.  I jogged after a Frisbee wrong thing to do.  i felt i was in a glass cage and i did not know how to get out.  Who was this new person inside my body and mind?  I was strong 17 year old that could do anything i wanted and communicating was a breeze  not any longer.  I facilitate a brain injury support group with my work and i used the illustration of brain injury is like a Rubik's cube the colors represent ones ability to be whole and the jumbled colors are a survivors current ability to deal with a ever changing world.  Praise God when two of the same colors align.

VERY FRUSTRATING!!  I can't find words, they're like files all screwed up.  I remember through repetition but nobody's repeating just getting upset!  Had a hard time accepting the new me and letting go of the old me.  I fought hard to get my life back.  I'm now trying to find where I fit in with my limitations.  I'm afraid of the world.  Everyone expects me to be normal.  I don't feel normal whatever that is anymore.  No one relates to  the TBI. They don't relate problems with TBI. I tried working.  Put in 60 hr wks making up.  Burnt out. 

 Bobbie1988

I was blown up by a truck tire in 1976 i have gone down hill ever since i was married in 1985 i was divorced in 2009 because my wife could not deal with my brain injury i am all alone i feel like no one cares i struggle to survive i can not remember things i have good moods & bad moods i am angry & don't no why I say things i dont mean & hurt others i dont mean to it just happens there are times i know what want i want to say & but i cant get the words out. this life is hell on earth. Desmond

Like being robbed of your identity and purpose in life but every single day you get up and try so hard to be even half of what you were....and Never getting there. 

Memories are shadows observed from afar.

TBI survival is having your automatic transmission magically changed while you sleep into standard transmission. You start at the beginning learning to shift & clutch in EVERY activity whether drinking water without choking or sitting up in bed. Unlike an infant who, with practice, goes into automatic transmission you are stuck in standard transmission forever

A lifelong commitment of love, caring, support and patience for the loved child who was in a deep, dark coma for so long. Upon wakening, this child is not the same one who was in an accident, who was away for so long in a place that we will never understand. It is a lifelong commitment to God for returning this child to me regardless of the  changes that occured during this illness. A lifetime of understanding and nuturing. Guidance,  grief, acceptance and denial. Happiness, anger.  Wonder and hope.  He is with me and for that I thank God. He was my little boy, and now he is my wonderful young man.

It's like trying to think clearly and live my life

in the middle of a Hurricane

I feel like I'm never going to be the same. I look in the mirror and I see me but, it's not me. I don't think the same. I don't feel the same. It is so hard just to get out of bed everyday. I use to love being around people and family. Now I cry when I'm in a crowd of people that are my family. But I feel like i don't  know them anymore. It's a sad and scary place. I would give anything to have my life back. I guess I need to start excepting that this is my new life. The stories i have been reading don't give me much hope that I will be returning to a life that I once knew.  PJM

Feeling like Alice, falling down the rabbit hole.

Like my brain/mind is broken, placed in a wheelchair, no room to maneuver in my head, yet with no arms and legs to move it around to figure it out...and no one behind to help push.

when your computer gets a virus.  Starts acting funny.  It does inexplicable things. 

Traumatic Brain Injury is the hardest struggle one can ever have! It puts us in a fight with ourselves, a fight that cannot be won!

I'm the wife of a TBI patient.  He was blow up in Iraq.  Seeing him struggle from the outsiders point of view is like watching him stand inside one of those giant snow globs that people put on their lawn at Christmas.  He is standing in the middle and all the little pieces flying around are his memories.  He tried his best to grab and hold on to as many as possible.  But as soon as he reaches out and grabs more the others are lost.  Everyday is a new day.  Or like all our none injured people have memories in folders in order in a filing cabinet.  All his memories are in one folder and out of order and almost impossible to even attempt to fix. 

Like trying to do everything knee deep in mud

Thinking and talking through thick gumbo mud, sometimes walls pop up to block the way.

Mine causes brain fog and memory loss. I get confused when too much is given me at a time. Sensory overload.

The lights are on and, YES, someone is home, it just takes a little longer to respond. Kat ;)

Living in a fog with a buzz. So lonely as people cant accept you are someone else. Standing on the sidelines of life wanting to be included but at the same time afraid of the crowds. Days the depression is so black and heavy that breathing is a chore.

Sometimes it is hard to believe that something so minor, fast, and random still causes such a disruption to my daily life.  I can function, but the changes are subtle.  I am not the person I was, and my colleagues think I am making it all up. So, I would say, TBI is an injury that can cause incredible self-doubt, which leads to that anxiety...  Which has led me to an even greater compassion to everyone suffering the effects of this invisible injury.  

Like playing golf... alone...with every shot going towards the sun and playing with a grass colored ball... It will be a tough and VERY long round with lots of people watching, waiting and annoyed at your slow pace!!!

Feeling like I am looking from the outside in at my life. Moving more slowly and deliberately. Double checking. Questioning old routines. But somehow it is not a sadder place. It is not a stressful place. From my new outside view I just see  areas for improvement in like how I used to react to emotional circumstances.  I just ask myself, with chuckle."Why do you do that?" "Don't do it that anymore". 

Is it weird I am just taking my month or so of recovery from a mild concussion to remodel myself a bit? When I found myself again I saw that me needed a little fixin' up. 

So far, my family doesn't freak out as long as we can talk about what their perceptions and concerns are and I can explain what I am feeling to them. But my not being my "old self" is disorienting to them.

it's like trying to climb Mount Everest with ice skates on WTF? How about when you feel like you should put yourself in a time out because of the ignorant comments or come back that you just said not purposely to people in your life?...these uncontrolabel moments are crazy!

After 29 years of being a tbj survivor, I have know gained the knowledge that I can only consentrate on ome thing at a time and hope that I will be able to finish what I started doing before l get either to tired, frustrated, bored , angry, or just to worn out trying to do what ever it is.

Life is changed forever. A true test of character and determination to live life in slow motion. Feeling isolated from others, but getting to know myself and God better. It can be depressing at first, then you realize how glad you are to be alive and decide to live and enjoy the life you have, now. I'm still the same person, just slower. I can't take anything for granted. I have to work for my health and quality of life to be restored as much as possible. Walking and dancing make me feel alive. Eating healthy food and resting helps me stay calm and restores me from the stresses of each day. I know how to encourage others who are suffering. Life is still beautiful.

A TBI is llike knowing what to do, but doing it takes soooooo long. I have been on the roller coaster for about 42yrs. and it gets better at times, then there are times when it is like it yesteryear. I am just grateful to be alive. I still need help at time.

.....like mashed potatoes. 
.....like being in a constant fog.
.....frustrating; embarrassing; fatiguing...
.....did i already do that?
.....what was i going to do???
.....you mean, we went down this road/visited this place already?
.....what's your name again?
.....it's my turn to make dinner.....again????? (a week later)
.....trying to remember something you KNOW is in your head but have no way of pulling it out because you can't find it........
.....wanting all the noise to stop!!!!!
.....wanting the world to stop spinning....
.....wanting to sleep, just to sleep.....
.....wanting it to be the day BEFORE the accident, when life was "normal".....
.....working through your breaks/into your lunchtime/after hours because you were too slow during the day
.....having conversations with others who think that you're understanding but in your head it's really like the voice on the other end of the phone in a Charlie Brown cartoon

Living with a TBI is like being thrown into a raging sea. Incessantly fighting with all your might to stay afloat. Every once in a while a calm comes, and you know the fight is worth fighting.

Like the mirror from Harry Potter, you see things in the reflection of perfection. Then you look down at yourself and realize that it will never happen for a multitude of reasons.

Worry about changes. Are they just getting older, or related to the TBI

Somewhat like a tree. It begins with 1-leaf and then adds many more. One can look at this a negative or a new beginning. I see it as a new beginning with all that is composed of it.

Most of the time, I feel like I just got off twisty amusement park ride; my head never clears; it is always dizzy. Crowds, noises, and lights frustrate me.I never know when a headache will surface, which part of my head will hurt, how severe it will be, or how long it will last.People don't realize that thinking is sometimes exhausting, frustrating, and difficult at times. It is hard to plan ahead because I am never certain of how I will feel.


 

Like trying to climb a staircase but just as you reach a new level the staircase collapses.  Constant dissappointment as you try to achieve things but end up with extreme brain fatigue for days, sometimes weeks, watching everyone around me out enjoying holidays and doing things in their busy lives like i used to do but knowing that I'll most likely never be able to do those things that most people take for granted, again.  Its lonely. Lots of grief but also some amazing learning, Being good at Living in the NOW, Compassion for others, Knowing that Love is what lifes all about.

It's like I've been digging myself out of a grave since the day I woke up. I consciously watch thoughts leave my head as I'm saying them. I am still the same person trapped in this limited mind. I wish I knew how to get myself out of this mess. I wish I could fix my brain and heal the broken connections. At times I mourn the brain I uesd to have, but I also celebrate the person I am today who is conscious of it all and still finds the strength and courage to keep on keeping on. I will win this silent battle.

 I did everything backwards from talking to brushing my hair had to relearn how to function again and did with the help of my MOM and DAD and both of my daughters. I also still have a hard time remembering things from the past. People, places, incidents, sometimes it is a blessing other times it is a hardship.

Life altering...

I have lost my job.I yell at people and frighten them and myself. I am ashamed of myself and don't leave the house much anymore.I have pain and think about it too much.I don't sleep without some dream or headache waking me up.I think about the same stuff over and over.I talk about the stuff over and over, An example of some of the things are people talking about me small things like did i raise the flag on the mail box.My inter voice talks out loud and i embarrass people. I am a outsider and the scary black sheep of the family.

For me it was as though I had gone through the ageing process within a day. I don't feel capable of doing what I used to be able to do... I am slower, I tire easily, I often mix words up or can't find the right word, I can't remember my past in detail, I forget names and dates and things that used to come to mind easily... And then it is definitely the case that you really don't feel like the same person anymore.

Sitting and trying to fight back the pain from the headaches and trying to remember what my wife asked me to do for the day. And trying not to loose my temper at those I love . TBI sucks big time but I've gotten used to the painful headaches that I've had for 9 years and only go to the E.R. when the pain stays at 10+ for over 3 days.

Getting up every morning and thinking "here we go again!"

A new day every day all day long. Confusion like my brain needs to be turned on every minute of eveeyday but I have no one button or reset button. Oh the pain just trying to think hurts so much like a bad joke. Having a good loving and caring support system is so helpful since I cannot remember how to drive or take care of myself at age 36

Mourning who you were and accepting who you are now. Relearning things you use to know, and trying to remember things you should never forget. TBI means writting everything down and having constant fatigue and migraines. It's also about... learning to sneeze without feeling like you're're blowing your brains out ;) Most importantly TBI is about counting our blessings and surrounding ourselves with people who understand and can appreciate our unique situations. PEACE & LOVE ~KAR

To me it is knowing what I was, fighting to get it back, losing more of who I was, and then finally trying to forgot my past achievements and instead focus on who I can now become. It is extremely frustrating some days, and then other days I have small windows of time in which I see all the ways that I have been blessed through my injury. It's an emotional rollercoaster and I'm still waiting to see where it goes.

TBI = Life will never be the same...and it does not get any better !

TBI the INVISIBLE injury

 

as if all the things on the desk get swept off, about every 10 minutes.... or another way to see it: its as if the 'computer's' hard drive overloads and shuts down for a while, like the old window 3.1 if more than one item tries to open at once....   thanks! it just means learning a new way to do just about everything...

Like a Tornado or Cyclone of Emotions then don't remember what was said or did an wonder why Folks getting upset

Like I forgot to do my homework and can't remember how to get home!

I liked the analogy of the puzzle.

My twist on it would be: I am carrying a puzzle box. All the pieces are in there. I trip and the puzzle box goes flying. The pieces scatter. Others come running to help me pick up the puzzle pieces, but we can't find all of them. Most of them, but not all. The puzzle can still be put together more or less intact. The whole puzzle picture is still readily recognizable, but some pieces 'are' missing. It's difficult trying to describe what the few missing pieces mean, to the overall outcome. It's just difficult and there are no - comparators.

Playing hide and seek with most things like; memory, your past, your present, balance, expressing yourself correctly, being coherent...

Trying to dance in a room filled to the ceiling with thick jelly.

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