"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 (395)

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.

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.

A ride you cannot get off.

No taste or smell to trigger any lost memories.

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

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

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.)

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..

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.

My Filing system is completely out of whack!

like being betrayed again and again.
 

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

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

Richard

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

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.

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

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

Like everything has been reset

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.

Pages