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

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.

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.

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.

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.

Feels like you are always on the outside looking in. And that you can only change yourself for one day because in the morning your not the same person you were yesterday

I can't think of a better way to sum it up than Christy:

"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."

I've used the "fog" analogy many times. You can see what's immediately around you, but trying to think beyond the fog takes enormous effort and is ultimately impossible. And that can be immensely frustrating and brings up feelings of resentment and anger.

Friends often realize that you are not quite the same and sometimes find you strangely off key. I'm often misunderstood and lonely.

I had brain cancer, about 20 years ago glioblastoma , which I was suppose die in 18 months. but nobody told me and so I keep living and thank God, I had six kids and now I feel like the child. With the way my kids treat me. I feel like they are always talking about me they don't trust me to hold the babies which are my grandchildren. After about five years after my one daughter had her children. She comes in for Thanksgiving and she lets her kids stay overnight at my house. Maybe it's because I got married again. I try helping my brain get stronger by playing brain games on the computer, I have a of trouble with my spelling and my math. Sometimes I wish I didn't survive this cancer, but then I did and now I just live with it. I have wonderful husband who accept me for me. I can't ask for much more I would love My children to visit me more, can't do anything about that either. life throws you a lot of curve balls I got too many.

I had brain cancer and I forget how to spell and have trouble retaining things all of the time. I feel like I am now the child and I had six children. They don't all understand how I feel how it's not fault, it was something that happen to me.

Waiting for people to be quiet without telling them to shutup so you can
continue with what you were doing, but wanting to tell them to shutup.

Eternal "on-hold" (the music stops, you think someone is going to answer, then the crappy, old music starts again)

I had brain injury and life has so changed for me. It is very frustrating that I am slower . My memory is not good and for no reason at all I am filled with either sadness, fear or anxiety. These emotions i feel daily. I just want to thank god for the support i have from family and friends.

TBI is like you’re screaming at the top of your lungs but no one hears you. Your struggling to say “I’m In here, give me some time to gather my thoughts “