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

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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

Believing in yourself every moment of everyday.

Anonymous replied on

Its a marriage that I never agreed to nor did I ever want its the nagging spouse that makes your good days bad and your bad days worse and will constantly remind you... Baby I will always be here for you...

Anonymous replied on

A long strange trip without a light at the end of the tunnel.

Anonymous replied on

The writer Larry McMurtry summed it up best for me, "It's like death, only you get to live"

Anonymous replied on

Knowing how how to do something and being physically able to do it but not now you're mind wont let you anymore. Go from ripping apart heavy equipment one day to nauseated from the sound of an engine the next. You can remember what fun is and what normal is and all you want is that back and it just never seems to come. Marcus

Anonymous replied on

"If only I could turn back time.." thoughts everytime. Jack. Mongolia

Anonymous replied on

I lost the life that I loved and hate the one I now live. Warren

Anonymous replied on

 Only survivor. It's being surprised by the words I say sometimes...I'll use a "big" word and think, how did I come up with that? Do I even remember what that word means? I used to know it--pre TBI--but it's usually like a Chinese word to me now. Except it will pop out on my "good" cognition days...and now, post TBI, I can barely remember the word and wonder what overturned file cabinet in my brain just righted itself for a second...(Received my TBI,  when a 10 ton water truck pummeled into our vehicle 30 years ago).

Anonymous replied on

My injury occurred when I was 20 years old. Like trying to decide whether to sue or not, I decided to focus (excuse the pun) on recovery and a creating a positive future for myself. 25 years later, I have learnt to live with it. Those around me help me to 'ignore' it and I have had a high function type lifestyle, but at the cost of my confidence, hidden confusion and memory loss. Have other women noticed a direct link with premenstrual fluid build up ? Has anyone done any studies referencing TBI with the menstrual cycle ? After about 12 years (and children) the effects were lessened to the point that there was no futher relationship between TBI and the premenstrual cycle. Curious about others experiences. 

Anonymous replied on

When I disappear for awhile, I like to tell my family and friends I was on vacation. I just don't know where I went or who I went there with. Karen

Anonymous replied on

To me it's like being lost in my own head. I don't know where I"ve been and I don"t know where I'm going. It's like being caught in a swamp and I can't get out. A terrible depression comes with it.

Anonymous replied on

Amazing and I love who I am now. 100% new me that isnt easy but simple.

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Anonymous replied on

Like looking in a mirror and seeing someone else.

It is like trying to walk straight through a strong tornado.

Brain injury is living a life that you do not even know, being replaced by a new you!

Anonymous replied on

Feeling like your best is a taste a away but never comes for every one progress another problem comes around.

Anonymous replied on

"Walking on eggs shells and not knowing what the current day or the next has to offer" Randy L Summers

Anonymous replied on

I just learned my TBI is cause for how I have felt (struggled) for the past 25 years.  No one told me...  until now.  My mind spins.  I think very fast (like brainstorming), and then become exhausted and have great difficulty making decisions.  

Disconnected, isolated, misunderstood, "so close, yet so far away", alternate universe (on the outside, looking in), 2-second delay, apathetic, forget to remember to look at lists I write, forget goals, useless, unworthy, etc...

Anonymous replied on

Definitely feels like im a senior sometimes......but im only 20. Its embarassing because i am actually pretty intelligent. ;/

Anonymous replied on

What I always tell people about my memory since the TBI is: "I am like a computer with a broken processor, the memory is there, the indexing is poor." - Jeffrey B.

Anonymous replied on

All I can think of is its like my life is an etch a sketch where I shake it and then I have a fresh start.  I feel lucky each new day because I know I am alive.  Do I wish it never happened ?  Of course I do but I'm realistic and this is my life now.  And the most important thing is I have life!  Its a journey each new day...

Anonymous replied on

it is more frustrating than anything i've done or been through! i'm recovering but so slowly it's depressing

PLEASE SOMEONE HELP ME!!  a 23 yr. old living in pittsburgh,PA

Amber George replied on

If you need someone to talk to ill post up my number I live in Texas and no one ever diagnosed me correctly from my strangulations and abuse I have two kids and I am 34 I know the struggles I am lucky to have a husband now to help but he sees the daily of having to remind me of what I was doing or what I was trying to say. There is hope I know some days I literally have none. But I’m still alive and with my kids that’s itself is an unforeseen gift. I just am afraid to forget the ones I love. I am also irritated with how many people suffer brain injuries and spine injuries that goes unseen and unhelped. But we are a community of help right here to one another. Sending you love in spirit to your home.

Anonymous replied on

Being lost in my mind, not knowing the words I need, obsessing so I dont forget not being able to recall what the man looks like who hit me so hard he cracked my picture of him. I want to remember what he looks like so I can find the bastard & run him over (rageful).Everything is slowed down now, my head hurts more, my neck my back, I am confused & dizzy.

Its irritating & scarey

Anonymous replied on

Frustrating not remembering even the greatest moments such as the birth of my daughter , starting a conversation and forget what I was talking about somewhere in it , maddening ringing like a gun fired next to my ear . Emotional wreck most of the time , fumbling & stumbling isn't funny , feels like I fell asleep in a rotating dryer , movements require intense concentration , angry alot . I don't look at pictures cause I really don't want to know how I used to be ....it hurts too much . But all in all I'm determined to do some things , it (tbi) took alot but I won't let it have it all. Hit in Feb.2012

Anonymous replied on

the BEST WAY i can describe it... cut n dry... is like having a chalkboard n your head, only the slate is WIPED CLEAN :/

Anonymous replied on

I have been living with my brain injury since I was 6 years old when I was hit in the head by the batter and knocked unconscious .  At the age of 19 I fell off a forty foot cliff while fighting a fire in the California Conservation Corp.  When I finally landed in the hospital they said I had a TBI and Hydroencephalitis.  They gave me a VP Shunt to help drain off all the extra fluid on my brain.  Which helped with the headaches.  But it is not a permanent solution and has been repaired or replaced some 14 times.

Anonymous replied on

Brain injury is..... A bitch. Can't ever get away from it. Survivor 34 years.

Anonymous replied on

Remembering who I used to be and not remembering me now.  Frustrated, angry, sad, confused.  More than anything deeply saddened that I don't remember my son growing up.  Thankful that family gave me a camera for pictures of him.  Truly angry that the person that did this to me only got a $100 ticket and I almost died!  So much that I don't remember.  Started writing a book about it but can't remember sequences of things.  Just so frustrating because I can't get the care I need!

Anonymous replied on

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.

Anonymous replied on

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

Anonymous replied on

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

Anonymous replied on

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. 

Anonymous replied on

Memories are shadows observed from afar.

Amber George replied on

I like to think this way my past memories weren’t great let’s all just make new ones for the better and love ourselves I know it’s hard everyday is a struggle but we got this

Anonymous replied on

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

Anonymous replied on

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.

Anonymous replied on

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

in the middle of a Hurricane

Anonymous replied on

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

Anonymous replied on

Feeling like Alice, falling down the rabbit hole.

Anonymous replied on

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.

Anonymous replied on

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

Anonymous replied on

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!

Anonymous replied on

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. 

Anonymous replied on

Like trying to do everything knee deep in mud

Anonymous replied on

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

Anonymous replied on

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

Anonymous replied on

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

Anonymous replied on

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.

Anonymous replied on

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.  

Anonymous replied on

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!!!

Anonymous replied on

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.

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