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

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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.

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Comments (386)

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.

Anonymous replied on Wed, 01/08/2014 - 3:57pm Permalink

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

Anonymous replied on Fri, 01/03/2014 - 12:04pm Permalink

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

Anonymous replied on Mon, 12/30/2013 - 7:51pm Permalink

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

Anonymous replied on Sun, 12/29/2013 - 10:09pm Permalink

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.

Anonymous replied on Sun, 12/29/2013 - 8:31pm Permalink

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

TBI the INVISIBLE injury

Anonymous replied on Fri, 12/27/2013 - 8:37pm Permalink

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...

Anonymous replied on Fri, 12/27/2013 - 7:34pm Permalink

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

Anonymous replied on Fri, 12/27/2013 - 1:57am Permalink

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

Anonymous replied on Thu, 12/26/2013 - 9:28pm Permalink

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.

Anonymous replied on Thu, 12/26/2013 - 7:42pm Permalink

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

Anonymous replied on Thu, 12/26/2013 - 4:28pm Permalink

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

Anonymous replied on Thu, 12/26/2013 - 1:11pm Permalink

A ride you cannot get off.

Anonymous replied on Mon, 12/23/2013 - 3:03pm Permalink

No taste or smell to trigger any lost memories.

Anonymous replied on Sat, 12/21/2013 - 7:08pm Permalink

never having an easy day again.Make the challenges enjoyable. They are not going away.

Anonymous replied on Sat, 12/21/2013 - 1:50pm Permalink

When I pull my car out of driveway and into the road but I don't remember where I'm going.

Anonymous replied on Sat, 12/21/2013 - 9:10am Permalink

Like dumping over a giant file cabinet, full of the "files of your life" & then spending the REST of your life trying to put everything back where it was... (sometimes only half ass... cuz that's THE BEST you can do/hope for.)

Anonymous replied on Fri, 12/20/2013 - 2:02am Permalink

Like having handcuffs on you brain. Keeps you restricted in your thoughts most times. When you do have a thought or something to say....by the time you try to get it out...the thought is either gone or changed all together. Very frustrating..

Anonymous replied on Thu, 12/19/2013 - 11:23pm Permalink

I resonate with every one of these statements. But I removed myself as much as possible from the life I had chose to create my own little world that embraced me for the person I became. My new community had no expectations of me to 'get back to normal'.

I love the internet because I get to choose who I interact with. *This is one of my favorite sites.

Anonymous replied on Thu, 12/19/2013 - 5:12pm Permalink

My Filing system is completely out of whack!

Anonymous replied on Thu, 12/19/2013 - 2:40pm Permalink

like being betrayed again and again.

Anonymous replied on Thu, 12/19/2013 - 2:37pm Permalink

TBI may cause memory loss but the one thing that never goes away is how it happened.

Anonymous replied on Thu, 12/19/2013 - 12:54pm Permalink

A long and strange journey that doesn't seem to have an finish line.

Richard

Anonymous replied on Thu, 12/19/2013 - 11:31am Permalink

Like reading a book and none of the sentences are finished.

Anonymous replied on Thu, 12/19/2013 - 11:06am Permalink

I asked my son this question in order to post of his behalf, his words "I don't know"

Meaning he is not aware that he has Anoxia brain Injury- And that his/our life has forever changed. Its been 11 months now since he was hung, spent the first month in a brain recovery center, 7 months of PT/OT and now its him and I for the long hall. I want him to understand, but yet I don't, he is happier today than he was before all of this. K.B.

Anonymous replied on Thu, 12/19/2013 - 11:00am Permalink

Visual issues & headache daily make you long for the old you which now gone. Frustrating!!

Anonymous replied on Wed, 12/18/2013 - 12:01am Permalink

My thoughts used to run like lightning now it feels like my thoughts are running through oatmeal!!!

Anonymous replied on Tue, 12/17/2013 - 10:51pm Permalink

Like everything has been reset

Anonymous replied on Tue, 12/17/2013 - 8:16am Permalink

The medical field has helped by saying, "It is, what it is."

Jimmy Stewart puts Life into perspective as Harvey quotes, "In this world you must be oh so Smart or oh so Pleasant. Well, for years I was Smart. I recommend Pleasant. You can quote me."

It hurts and causes problems to hold on to your past self. Consider yourself, with all the brain fog, shakes, and aphasia as the New Normal.

Anonymous replied on Thu, 12/12/2013 - 11:46pm Permalink

Is isolating... lonely, scary, clumsy, and amateurish. ~Tawana

Anonymous replied on Thu, 12/12/2013 - 2:45pm Permalink

Sad... because tomorrow I will not be able to recall one if these comments unless I write one down.

Anonymous replied on Thu, 12/05/2013 - 6:01pm Permalink

I lost the majority of my vision with my TBI almost two years ago. I only have hand motion now, but though that should have been something good, I also experience hallucinations. My world is bright, colorful and so confusing it hurts. I don't know what is real and what isn't and somewhere I lost myself on the outside along with everything else..

Anonymous replied on Wed, 12/04/2013 - 5:00pm Permalink

missing what you once were able to do.

-Adeeb

Anonymous replied on Wed, 12/04/2013 - 12:05am Permalink

Invisible. That's how I feel. People who used to listen and hang with you suddenly act like you're invisible. Lonely is another one. Mostly totally confused all the time. Like you're in the middle of an ocean trying not to drown and everyone else around doesn't even realize you're there and that you're in need of help.

Anonymous replied on Thu, 11/21/2013 - 5:40am Permalink

Constantly feeling disconnected/lonely & chronic mental fatigue.

Anonymous replied on Sun, 11/17/2013 - 3:29pm Permalink

You can never say or do the right thing with family and friends any more!

Anonymous replied on Sat, 11/09/2013 - 3:46pm Permalink

You want your old life, back, but will never know what it is or how it was like it\'s just a reboot - Dylan

Anonymous replied on Mon, 11/04/2013 - 2:06pm Permalink

remembering how i used to be and not feeling the need to talk about what happened just accept the present. The access is not there why struggle to when the words are not there? Some people think you have a bad attitude and I don't

Anonymous replied on Sun, 11/03/2013 - 9:26pm Permalink

the loneliest, most frustrating time of my entire life. Its like forgetting who you are and wondering if you will even come back. So much doubt

Anonymous replied on Wed, 10/23/2013 - 7:20pm Permalink

Like living in a dark cave hearing faint echoes of memories knowing they are there and not being able to find them in the dark. ~Doctor become patient

Anonymous replied on Mon, 10/21/2013 - 5:18pm Permalink

For me it is like waking up every morning with a hang-over even though I have not taken any alcohol

Anonymous replied on Mon, 10/21/2013 - 4:20pm Permalink

Standing in the middle of an intersection and everyone is honking their horn for you to move, but you can't.

Anonymous replied on Sun, 10/20/2013 - 11:46pm Permalink

Like being a Stranger in a Strange Land.

Anonymous replied on Sun, 10/20/2013 - 9:32pm Permalink

Feels as If you're starting over with life again.

Anonymous replied on Sat, 10/19/2013 - 10:41pm Permalink

So many good comments! For me, its becoming a puzzle that has been scattered, some pieces soaked in water until the images have come off, some twisted to the point that you'd have to hammer them into the puzzle if you could figure out where they fit, some like they'd been carried in a little boys pocket along with several rocks for weeks, all this then occasionally you get a glimpse of the portrait, see who you are(should have been)but are not nor will ever be...Hubert Rondeau Alberta Canada

Anonymous replied on Sat, 10/19/2013 - 6:58am Permalink

Like driving an old jeep with shaking steering down a road filled with potholes, you've got to be constantly correcting yourself.

Anonymous replied on Mon, 10/14/2013 - 12:40am Permalink

I struggle every single day to stay on this earth.

Anonymous replied on Mon, 10/14/2013 - 12:37am Permalink

A TBI makes it difficult to get from point A to point B every single day. One never know if you will make it. It's getting lost in an area you have lived al your life. It's not recognizing people you have know for decades.

Anonymous replied on Mon, 10/14/2013 - 12:06am Permalink

They say you're lucky, but it never disappears.

Anonymous replied on Sun, 10/13/2013 - 11:59pm Permalink

I took a picture of the ending of a day lily. There are no color, no life. I wrote on it - "Memory of myself". molly

Anonymous replied on Sat, 10/12/2013 - 11:50am Permalink

Walking up the down escalator of life

Comments (386)

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