"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 (359)

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.
 

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

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

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..

missing what you once were able to do.

-Adeeb

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.

Constantly feeling disconnected/lonely & chronic mental fatigue.

You can never say or do the right thing with family and friends any more!
You want your old life, back, but will never know what it is or how it was like it\'s just a reboot - Dylan
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
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
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
For me it is like waking up every morning with a hang-over even though I have not taken any alcohol
Standing in the middle of an intersection and everyone is honking their horn for you to move, but you can't.
Like being a Stranger in a Strange Land.
Feels as If you're starting over with life again.
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
Like driving an old jeep with shaking steering down a road filled with potholes, you've got to be constantly correcting yourself.
I struggle every single day to stay on this earth.
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.
They say you're lucky, but it never disappears.
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
Walking up the down escalator of life
My son seems to be on a path winding through a dense woods and every few steps he veers off the path and wanders about until finding the path again.
more understanding ,after seeing my MRI 10 years after TBI-how the brain rework around dead frontal lobes spots ,still so wonderous
I'm getting better! It took me a year to be able to read a book. But I can do it now.
It seems like I've been asleep and woke up and everything was different. Not because I remember the way things were pre-TBI, but because I don't remember.
It is a feeling like you brain is stuck in quick sand. All I can say is don't give up. It's going to be hard but don't give up. Get into a TBI support group or if there isn't one start your own. Exercise, read, meditate, do yoga, hike, eat healthy, all of these are wonderful for your brain.
TBI, esp. Mtbi is a lifetime of explanations to strangers, begging for mercy (lower the music, talk slower, etc.) and being treated like a partial person if can't manage allergy reactions to diabetes medications, amputation, heart attack, kidney failure. It is the syrup on the plate that rolls off the pancakes of life onto clean tablecloths and your best clothing. It gets old after a while to keep on explaining that I am a tbi survivor, therefore this and therefore that. I'm tired. And I sure didn't deserve it.
I liked the analogy of a TBI being like a cage. When I was in my coma I had a very long dream of being tied to the mast of a ship. No one could see or hear me so they kept moving. I feel like this is a wonderful representation of what had happened in the years following my accident... ~a lonely soul
My head hurts and brain is collapsing from reading all these comments. So I stop for awhile and start again. Every day is like this.
Living with a brain that makes you become a NEW you unwanted
All that used to be familiar. Now become strange and broken in pieces, that just will not fit togeather. Phil
Depressed, angry,and I do not recall the doctor mentioning this huge sunken part of my head/face. Droopy eye.......an emotional roller coaster. I want off!
What was the question?
part time intelligence, part time chaos and confusion. Hard for others to see a condition that has no apparent visual tells.
a constant challenge of physical pain, stamina, emotions and faith.
the continual struggle with everything.
an Assassin. It claimed the life of my wife, but it was a long slow and often painful sentence. 18 years of slow deterioration, although the last 3 months was rapid.
Being alone in a crowded room. -Brian
I feel like a freshly shaken Etch A Sketch
Like thick cataracts and super loud noise all the time. Been living with it most of my life. Sometimes death looks appealing
Extremely frustrating at times especially trying to process to much at one time. You eventually go dim yet u think u be able to do it all. Then the numbness sets in and the processing ceases and it's not that u don't care u just burnout and fade. Kevin
I've always described my injury like I was reading a novel. I was enjoying the story, then one day I couldn't remember anything I read, so I had to start over. When I opened the book to the beginning to start over all the E's T's R's O's and N's were missing from the words. I could still read the story but it didn't flow as easily anymore. I got tired, and frustrated quickly trying to read it. It wasn't as enjoyable anymore. Nancy Garland - Ontario, Canada
at times severely depressing when you tell people you have a TBI and they don't believe you ...when trying to make decisions the brain becomes overloaded to the point of avoidance ...when support is needed the most there is no one there ...
when your sporty car comes to an end, just like most of your social aspects in life, you were proud of, come to an end too...
...being alone!!!
the lights are on,but nobody\'s home. Getting overwhelmed looking at a menu and not being able to make a choice. never having a drink, but drunk all the time.
Being very easily overwhelmed by too much of anything around you.too much noise, conversation, images, wind, rain or sunlight. Constantly wanting to retreat to a dark cave with a blanket and pillow.
http://p1.bikepics.com/2013/05/13/bikepics-2554992-full.jpg Living and trying to get out every day from the thinest glass cage,all dressed up in the heaviest steel ever...

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