"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 (358)

Leaving the best ingredient out of the meal...

I was 23 years old when my accident happened April 2, 1996. I had left frontal lobe damage. I have right side weakness, short term memory issues, fatigue, some brain fog, and alot of physical pain. I met my husband after my accident. We've been together 21 years and married coming up 18 years. Have a 19 year old son together. Some days are great and others I feel so completely drained. I get told that I'm lazy alot. My biggest supporters where my parents. They have both passed away now. My husband trys but doesn't seem to really understand. He just sees that I have a little bit of a physical difficulty. Not anything underneath. I've been able to live on my own since 3 years after my accident. I'm not dependent on anyone to help me on day to day responsibility's. I do reminders on my phone and notes around the house. I just wish I could wake up from this fog.

Confusion...especially when I was never told about it or never heard the words Traumatic Brain Injury. I am currently waiting, impatiently if I’m honest, to see a specialist to confirm what has deeply impacted my quality of life and continues to on a daily basis as it progressively gets worse.

A constant unending battle with self-identity. I had my head injury when I was 5 months old, too young to have remembered having a personality. I don't know if all the things that are wrong with me are due to the head injury, or if I'm just this way naturally.

Like having a heavy weight sitting on top of your head pushing down through your body all the way to you feet that no one else can see

Its like your file box got dumped out and someone shoved all the files back in out of order. The files are still there but good luck finding one when you need it

I feel like I have to grieve the loss of myself so I can accept the new version of me and it’s terrifying.

It is alright to grieve the changes. I am the wife of a TBI survivor and I also grieve the loss of the husband I had and accept and love the ‘new’ husband I have. At time I feel guilty that I feel frustrated or wish I had my ‘old’ husband back because I know how bad he could have been and should be only grateful at how well he is doing. I think we are all connected in this journey and life has so much to offer - even grief can be good to transform the new you. Best of luck with the new you. You probably are an improvement from the old you, however it is ok to grieve the old you.

Slower in everything ....may appear to others as perfectly normal but not....forgetful in all things... believing I’ve completed a task but haven’t... people not understanding that I have deficits

Reading these makes me sad because I know what they say. I'm so sorry for your loss and pain.

I had an infant tbi. Glasgow scale of 8. I'm 38 now. I have never been able to reach my goals and am alieniated. I had dirt in my wound that hads deformed my skull. Honestly they should have put me down because when you peal a rotten onion it makes you cry and it's just layers of rotten. And it's getting more rotten everyday. O boy thanks Mom.

After 19 years I've discovered there is no healing From this.. Only ADAPTING to the massive uncontrollable unforeseeable changes, and that's only if one's strong enough to do so.

After my bleed I became rude, verbally nasty, and would ask very personal questions to people, But the most devastating effect was the loss of memory. I forgot how to cook, how to play the organ. I became unable to deal with money effectively. I am emotionless, haven't cried since the bleed.

It’s like reaching out to something you can see, but realizing it’s a hologram. You can see it, but you can’t actually grasp it or communicate it to others. You know it, but you are unable to say it. The simplest words... “car” “pencil”... You can see it, but you can not find a way to vocalize it. You can no longer make words happen...

Feeling like I’m just outside the lines of everyone else. Notes, quotes, alarms and self-help scheduling. Feels like I Went from high-speed internet to prodigy dial-up. Whole sensory system got amped up. Now I can hear, taste, smell and feel things I couldn’t before. I’m not always finding this to be some kind of superpower. (Except when I could smell a gas leak at the end of my driveway when no one else could). Every single thing in my life seems like such a struggle to do. The phrase, “out of sight out of mind” is no longer funny to me. It’s real. And I have no idea how to explain this to people that see only the outside of me.

Sounds like me

It is really frustrating when people say "but you don't look disabled" .

I feel worthless, not accepted, emotional, very angry, agitated, no control in own life, tired, dazed, hurt, misunderstood, ugly, body won't turn off heat, non-balanced in walking, suicidal.

After being hit at a red light by a porta-potty truck at a very high rate speed, all I know is I am alive and hate to be on majority days. I don't like mirrors as I feel ugly due to no one understanding the way my brain feels like it's going to to explode. All I hear is "be or act normal" as these LV Drs would say to do! I even tried going back to work to "be normal" and started forgetting the names of people I have worked with nine-plus years,  forgetting procedures, or just not comprehending the new training material.

Nothing is normal about me anymore. Stuttering on days, wanting to drive off the freeway on days. I am scared of myself.

I wrote an extensive response to you earlier, I forgot to mention MANY things, of course, a typical part of my every day. I think the hardest part is not being able to come up with a word — a word that I should know very well. Also, not remembering parts of my life. And thirdly, falling or bumping into things and people due to my vision, and also having to use a walker so young. I was denied again yesterday for Disability, for the 1,000th time it feels like. I had multiple doctors document my inability to work. I also had two neuro-psych evaluations the recommended time apart. The second was supposed to have gotten better; however it didn't which I knew and had been telling them I was remembering less and less. That is when they ended up diagnosing me with the Moyamoya. Sorry for rambling

I know exactly how you feel, and I feel the VERY same way most of the time. I am sorry, I wish I could find a fix, either for us or for society. 

God bless you and here is to the hope that we can find enough each day to keep us on the positive side of things. (When I know most days are rough)

Something that helps me is prayers (from myself) and others so if you are a prayer I would greatly appreciate any prayers, and I will be praying for you and others with our same concerns. Another thing is an app on my phone called Lessons in Life Quotes. It has hundreds of inspiring quotes.

Here is a VERY brief background on my situation: I was an LPN for eight years and was able to go back and get my RN degree (Lifelong dream) It was HARD, I had four kids and drove 2 ½ hours one way 4-5 days a week for a year and a half. I received my Registered Nursing degree in 2010. (Next to my wedding, the birth of my kids and grandbabies -- It was the MOST amazing day of my life)

Then in 2014 (in 5 days it will be FIVE years) I had two strokes, and then a ruptured brain aneurysm which required a month in ICU on a ventilator. I had many setbacks: bacterial meningitis, vasospasms, hydrocephalus, double pneumonia. It also affected my hypothalamus which causes temperature irregulation. It could be 50 degrees Fahrenheit and I'll be sweating in a tank top and shorts. It is just another ANNOYING one of the million effects of this.

I know I have a lifetime ventriculoperitoneal shunt (VP Shunt). I have lost so much and now have been diagnosed with a rare condition called Moyamoya. My left carotid artery is 100% blocked so I have been told to watch for right-sided stroke. I was only 40 when this happened, and now 45. Most people don't survive. I do understand that.

Like you, some days I think "what is the benefit?"
That's enough negativity out of me today. Have a wonderful day and God bless.

In rehab I too could not look into the mirror in my bathroom. For the same reason. Thanx Dawn.

I decided today I needed to start some sort of therapy I had emergency brain surgery two years ago and went from a high functioning surgical RN to a retired angry, depressed person. I had never thought about what I would do in retirement, and now I have numbness and limited ability on my left. I also have right, left, and number confusion. My spouse is nonsupportive and says to me "welcome to old age." He also has no patience with my confusion and yells "WHAT DON'T YOU UNDERSTAND?" He also can't understand my inability to cope with loud music or radio noise. He blames me for doing it on purpose to piss him off. Sorry for the long complaint! I feel isolated and alone.

It feels like I’m not in the real world anymore. Confusion, moments of clarity, more confusion, you can hear things but you aren’t listening, like the sound the parents make in Charlie Brown movies “wa wa wa” monotone honks you aren’t listening to. Anxiety not of physical harm but of not being understood, as if I had some type of autism. Used to be smarter and articulate now just trying to achieve bare minimum. Used to be pretty empathetic but it seems like I have none to spare for others, I spend it all on my self. Self fulfilling prophecies don’t apply to it and there is no initiative to take to get over it. Take the help you can and let time heal. Don’t make anymore dumb decisions.

Hi, does the PVT. stand for Private? If so think you SOOO Very much for defending our country. I am sorry you are suffering, I to am in your same situation and I couldn't put it in to words like you did thank you soooo much for that. God Bless

Like being on sloww dial up and everyone around you is on High Speed internet

My brain has become like a mobile phone. Still clever, but the batteries drain quickly and when the last bar disappears my brainpower goes in one second to zero. Then just stop talking to me please, I can't accept your talking anymore and this annoys me greatly.

Yes 100% best explanation! I often describe it as being on really slow dial-up when everyone around me is on High-speed internet. My DSL up is extremely slow or it just bumps me offline totally

Like living in fear 24 / 7 and no one understand

I agree

U just want to go back to being u; but ur gone. Everything is scary cause it requires thought. Nothing is automatic anymore. Confusion leads to anxiety. Which leads to fear. Which leads to being alone.

WOW Dennylee You said Exactly what I have wanted to say for YEARS and couldn't bring it to words. THANK YOU

It is like living with a demon in your head, being forever careful to contain the enemy within, while it destroys your memories and sense of who you are.

My life now is just snap shots. My wife misses who I was. Me too.

How do I explain to someone I now have dizzy spells panic attacks anxiety memory loss that I'm slower and things are harder for me when I can't even understand how why this happened or who I am anymore.?!?

Jennifer, you took the words right out of my mouth! My brain surgery didn’t leave me so out of whack that it would be easy for all to see. It left me just off enough that I no longer feel or sometimes think like the way I use to. For me it’s like my “flow” of life was taken.

After my surgery, no one talked to me about the mental health issues I could have after. Nor did we get any paperwork. So “looking fine” on the outside, therefore, left everyone thinking I was ok on the inside. No one believed me. I was told it was just anxiety and to get over it. Thanks, people, not very helpful.

I struggled and searched for answers for four years before I was acknowledged as having brain trauma and that I wasn’t making all this stuff up. My husband threatened divorce as extra added STRESS! Ya, how do you tell someone what is going on in your head, when you can’t even figure it out. All I know is I don’t feel like the same person I was before the surgery. I’m still having a problem with the oh so much SLOWER pace that I have to be at for my brain not to get tangled up in knots, and go crying into the next room.

People tell me to go to a support group. Ok, which one? Brain injury, stress, anxiety, depression, memory impairment, ADHD, bipolar, marriage counseling or possible divorce.

Wow Exactly how I FEEL

You can explain but unless you are us; they don't get it. I have people I care about go here on Brainline. If they care, they will take the time and read. If they won't or don't; no need to explain anything

I feel like an economy car in a race against super cars

Feeling like I don't belong anywhere.
Wondering if death would have been easier.
I look in the mirror and see the same face but then I open my mouth and hear a stranger. Loneliness.

I am so sorry you feel this way. I understand because I felt the very same way and on occasions I still feel that way. Please give a call to someone, anyone when u feel this way. Connect online with me and I will talk with you as well

I look into the mirror and see someone who looks similar to me, but it's not me.

The real me is gone.

In the beginning I remember looking so different i actually looked in the mirror and thought who are you? I now look normal mostly but I'm still trying to figure out who I am now.

Erika, this is the first time I have heard anyone mention looking in the mirror. I have the same experience. I see my face, but I don't "see" me. I also feel like I don't belong anywhere, even in my own home. A lot of people (family and friends) get frustrated with all of the behavioral changes, especially since, like most, I look the same on the outside. I have started meditating. Not easy to keep my mind "still", but I am finding that it is helping.

Joni I am sorry, I replied to you and started it off by calling you Erika (I guess I saw you say it and it stuck) Sorry

Erika I feel the Same, I thought about Meditating or Yoga, However I can not get my head to stop long enough to finish a thought, or an activity. UGHHH Best of luck, and God Bless

Michelle, no apologies (referring to your second comment). I understand completely. Meditating is tough. My brain wants to keep going and going, so I try to concentrate just on my breathing. Sometimes this works. I am registered for a TBI yoga class that is starting in few weeks and I am terrified. I wish you the best and God Bless you too.

My experience, Post-TBI (and viewed in the most positive way), has been like starting your life all over again. Most obvious to me is that, after the injury, I cannot attend elementary, middle, or high-school again. If anyone can understand that without that educational foundation, attending college (because that is where you find adults) in order to further one's education, could be equated to someone learning to swim by being dropped-off in the ocean not knowing which way to go.

I am not suggesting that recovery (learning to swim) is impossible (depending on the extent of the damage), but the path is littered with hills and valleys. Depending on the Day, those "hills" can be mountains and some of those "valleys" may as well be cliffs.

Imagine an 8 inch funnel full of water with your finger plugging the outlet. Now sprinkle glitter into the water. Imagine that each piece of glitter is a thought or idea. Remove your finger from the bottom of the funnel and then realize that you have no control over which thought or idea will come out next. . . . Welcome to my experience.

I have found humor (as well as truthfulness) in the following quote credited to an unknown author: "Better it is for you to think me a fool, than for me to open my mouth and remove all doubt."

My mTBI happened on July 11 this year from a fall onto rocks. Four and a half months later it still feels frustrating as hell - like I am a stranger even to myself some days. You do things and misunderstand people in a way that you would never have done pre-mTBI when your cognition was at its best. You can no longer control your temper and lose it saying horrible things to the people that care about you most - and feel awful when the emotional launch is over. I struggle to cope with bright and artificial light - not ideal when you have to close your eyes in the car as a passenger and realise driving is not on the horizon anytime soon. I also struggle with noise - not good when you are a teacher! I am still not back at work yet due to the driving I do as a Resource Teacher and my work colleagues do not seem to understand just how crippling the fatigue actually is - it could be deadly if I was back at work. I am also trying to finish a Post Grad paper - retention of detail and the ability to locate the words I want to use in my assignments used to be easy but not now.

My biggest discovery to date and something that took some work to get my head around is that recovery from mTBI is not linear and, even though I look fine on the outside, it is still pretty mucked up on the inside.

I describe my BI as if my mental filing cabinet was shaken and the files were all put back in a complete random mess. I've spent the last 18 years reorganizing the filing cabinet and amazed to still find misplaced files. Speech is still difficult.

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