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

Return to article

Comments (492)

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.

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.

I feel you I deal with the same stuff except mine Injury happened by strangulation and beating by the head about 16 years ago I have two kids with the guy who changed my life forever and now he has taken them because I’m seen as aggressive and out of control if it wasn’t for my husband I wouldn’t be alive. Because the anger days and the rage days I hate myself for. The days I wake up hot as fuck and raging without control with abounding headache are the scary days. If you guys don’t already I recommend a high dose of cbd and thc it doesn’t take it away but I find it helps wit the pain more than anything. God bless you all and hope you find strength and courage when you need it.

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.

Or smelling and tasting things not there

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.

Mine too. Sending you love in spirit. I look at everyday as a hidden gift I have two kids I still see everyday and haven’t lost their mama yet they still see us for us and love us that’s why it’s worth the struggle and hidden pain

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.


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.


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.