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

This has been my scenario since I was stricken with Hydrocephalus, at five months of age and little was known then, I am 55 years of age now. I have struggled with the detriment of with little, to any support system at all,ever !!!!

I spent many years pretending / no convincing myself that I do not have a TBI but after reading all the definitions of how this affect people it has made me realize that   not only do I actually do have a TBI but I am actually very lucky as my TBI has never allowed me to stop doing whatever I wanted to. I understand over the years, it is 13 years since I suffered a fractured skull due to being hit by a car, I have adapted my life to not be fearful of things. If you want to do something then do it, don't let people tell you you can't cos ......... Surviving makes you brave, sometime's a little inappropriate, but lets face it even people without a brain injury can be in appropriate occasionally. So it's the bravery aspect that needs focusing on not the poor me. And that's my take on TBI :-)

Like demons are controlling my emotions on overdrive...they have driven away my whole family and are draining the love of my life, who is all i have left, but will probably leave because he can't handle this over and over and over.  I can rationalize at times and see how i ruin everything, but then i get so easily overwhelmed and flooded with uncontrollable emotion and anxiety it ruins the things most precious to me.  I come across as a liar and disrespectful when it could not be further from the truth.  I cannot drop an arguement, I am not understood.  I do not even understand myself.  I miss the old me.  I feel like an abandoned child that thrown in a pit i can't get out of.  I am frustrated, lost lonely, forgetful, hopeless.  I can't cope.  Bad things keep happening.  Everyday i am walking on eggshells because i am worried how my anxiety will affect others and ruin me and what i will mess up.  My spirit is broken and I am breaking my spouses...the harder i try, the more i fail.  I am like the boy who cries wolf to everyone, except they can't see the problem which is much larger than a wolf.  Dr's and specialists just listen and send me on my way.  I am afraid after 5 years that i will one day lose everything and be homeless.  My heart jumps and skips beats.  I feel i am dying a slow and painful death and people think i am crazy.  I am on a merry go round that i can't get off of that should be called a hell go round as everyone else enjoys life and can deal with adversity.  I want to be there so badly but the more i try the more i fail and hurt others without wanting to.  Breathing is an effort.  Ceasing to exist seems like the only way to peace.  I have 2 little pugs who are always there for me, even they can tell i am a mess, but they still stand by me.  Life is passing by, I am so embarrassed and make the same mistakes over and over, so i am not taken seriously anymore.  I was in a bad car crash and roll over several times 5 years ago.  I look "normal" but I am not.  I feel i am overlooked in the medical system, falling through the cracks.  I used to be a nurse, a snow boarder, a surfer, a traveler, played hockey, volleyball, wake boarder, full of life with goals, hopes, and dreams...now life is like a glass timer with sand dropping grain by grain...each grain represents the anticipation of the constant struggle,heart ache, battle and frustration of failing when i am trying harder than ever to move forward.  Eventually the sand runs out, just like those closest to me have slipped away....I am down to my last grain of sand...my spouse...my everything...my life line, but I am hurting him and it is not fair.  I love him deeply but cant seem to get things right.  I am shouting but no one can hear any more...it is like being stuck in a horror movie that will not end.  I am scared, lonely, ashamed, and embarrassed.  I wish i could snap out of it.  I will not live without my spouse, but it seems he has had it with living with me.  I have tried to reach out to God in total desperation, but do not feel a connection of any sort.  I have gone on and on and on and could keep going, but if anyone has read this far, i think i have made my point.  Many comments have here have made me cry.  So sorry to all those struggling.  Wish i had words of wisdom

Thank you all for your comments.  I have been given confirmation and some sense of relief.  What I will take with me is "Discover your new self".  It is who I am now.  Not less just different. I am not alone.

My traumatic brain injury is a jenga tower, i keep building myself up just to fall down to where i started again. I have dealt with it my whole life, but even the "normal" days bring anxiety and fear, every other day brings shame and sadness from lack of normal friendships for 13 years, in middle school the other kids noticed i was "different" so i was an outcast, and still feel that way. The epilepsy that started a few years back makes things more stressful. Lack of vision in my right eye from the injury haunts me daily.

I too had a brain injury and although things have been different and may not remember many things, I trust in God because His ways are always perfect. I forgot many things including moments that I know must've been painful for me but those memories are no longer there. Yes, I may not memorize certain things but as long as I remember that He gave me my life back, I'm grateful and He was the one who saved me. I was dead. So don't worry, friend because He still believes in you.

I had a stroke four months ago. I lost the use of my right arm. With lots of work I am regaining the arm and slowly getting control of my fingers. What surprises me is how exhausted I get what I do different activities because the brain is having to rewire itself. I can relate to most of the comments on this page, I am fortunate that my case is not so severe but I can empathize with others who are having a lot harder time than I. it will take a lot more work a lot more therapy and a lot more patience before I get back to "normal".

Like loosing you mental sense of gravity and floating around with stop start signs in daily routines. If you cope you do it with swagger but you know its not right and you not the same inside. When you cant cope you hide.

I'm like a jellyfish on the beach, little Timmy poking it with a stick "eww gross, what is it?" Everybody telling him to stop and leave it alone but just watching to see what will happen.

I have come a long way since my TBI, but it has changed my entire life and left me feeling so alone. I am very intelligent and can do many things. However,when I do tell others I have had a brain injury and I honestly dont understand something, they look at me like i am crazy. Whats even worse is when I try to explain, the best I can, where I am coming from or how MY thought process works....I am told, "There is nothing wrong with you. Its you, you just dont want to (whatever). I dont believe that brain injury crap." My problem is that I have learned how to adapt into society and mask things to try and lead a normal life again but emotionally i feel like i am dying at times. JUST BECAUSE YOU CAN NOT SEE IT, DOES NOT MEAN THAT IT IS NOT REAL!!! I just want to be able to live life and to be happy on the inside and stop just maintaining from day to day. 

To all of you who are living with TBI such as myself... Keep reading and learning and maybe something will click from time to time, that will help you to understand yourself a little better. 

Thanks for reading my words and hope it helped someone.

Renee

Like taking one of those tests... If you could live anywhere where would it be a) country b) city c) by water ect... Or what, where first date it's now like taking it for two people not all answers are the same. The new me answers differently from the old me

Memory taker, life changer & makes you a "new you" that don't like.

All these comments have literally brought tears to my eyes! I was involved in a multiple roll-over (x6) MVA 6 years ago. The ER I was sent to is a level one trauma center. They CT'd my head and told me I had a concussion, and within an hour after the diagnosis, had chosen to release me as long as I had someone to "watch" me. My mother (also in healthcare) threw a fit, stating that we lived more than 2 hours from this facility, and more than 45 minutes from the closest acute care center. They chose to keep me as an 24 hr observation patient, so I stayed the night. The next day, as I was literally being wheeled out the door to go home, I was administered a neuro exam by the nurse, and failed miserably, yet was still discharged. For SIX MONTHS I had difficulty speaking, as if the word was on the tip of my tongue, then it was gone. I couldn't focus on anything, and my memory was a mess. Not to mention, debilitating headaches that would last for days. Not one time was I ever re-checked post discharge, or scanned again for the presence of a bleed, or active swelling. It was over a month before I could go back to work, and that was pushing it. I tried to explain to my Dr. I did not feel "ready", I felt "off". Like I was in a fog, just as you all describe. However, I was pushed to get back to work....IN HEALTH CARE. It has been 6 years, and some things have improved, but I still "word search", find it difficult to focus, or multitask. I am overwhelmed easily, and have mood swings, anger issues, and severe cluster and migraine headaches, some of which causes temporary hearing loss in the affected side, and facial numbness. Sometimes I have difficulty focusing when I read, I see words that either aren't there, or words entirely differently than what is printed on the page.  I get angry because I feel my injury was not taken seriously, then cry because I feel like no one understands. Reading these comments have made me feel like I am not alone, and my heart breaks for all you who have taken the time to share your experiences. Thank you for sharing.....

Regressing in age. She may be 19 but it feels like im taking care of a 10 year old. That has breakdowns and mood swings.

We are one of a kind, meaning, there is no one with the same brain and in turn no two brain injuries are the same.

Check out my website: www.chadfrancour.com to see my inspirational story after a TBI.

After reading all these comments of others experiences I realize i am so not alone.... after my injury it was like i was in a life that wasn't mine anymore.. I was there but i didn't feel like i belonged .. I moved away from this area and started over again... 20 yrs later i returned and that same feeling is starting all over again.. it's like i'm living in a parallel world that i don't belong in.

My brother was a lawyer. After the brain injury he can't talk. In the beginning he tried I convince the doctor to take the trak out. I began to give him water. Everything was slowly progressing then his facility close and he's in a place where the people don't care he regressed. .. I wish I was rich I'd be able to give him better treatment. It hurts....

Not all there, trapped , confused, brain won't answer blank,

Scaling a wall without suction.  You can see it, touch it, know what needs to be done but you just can't get it all together.  It's almost as if you're an unexplainable magician.  You start the trick with multiple objects and you concoct this awesome looking piece but neither you nor anyone else knows how you got to the finished product.

A LARGE PUZZLE where a number of those pieces are Broken, a few of the pieces are Disfigured and some of the pieces are Missing. I found the key (if possible) was to 'locate' all of the pieces, fix the damaged ones, adhere them together and then paint over all of them - to get some consistency. Everything has changed - but nothing has to remain where it is at .... God Willing.  The Environments in which we find ourselves is KEY.  Levels of recovery will vary, but pursue the best options available – if they can be figured out!.  Life has taken a drastic nosedive, but a Knowledgeable, Understanding and Supportive Environment will make life so much easier.  Survivors need to hang in there and move forward.

like losing yourself yet feeling like you can still be him/her if just ___. like trying to claw your way out of a deep ditch and always failing. Nothing's good enough anymore and my best doesn't meet other's standards and expectations so it leaves me feeling ashamed, frustrated, inadequate, and angry. The list goes on and on...