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

I was brain injured thirty five years ago. By now my definition is:

The constant presence of my former self as a shadow in the fog. It is just beyond my fingertips, and I miss me.

I love Alison's description. I posted it onnmy FB along with my own description fleshing it out based on my experience. Here is it.

"Read the quote then continue reading here. It is so true. Some places that "came down" or stayed up made sense. The weak structures crumbled while the strong ones held. But then I come to other places and I wonder why are you still here? Why didn't you come down in the quake? Or where did this or that go? It was so strong. The quake should not have caused that much damage.

It was not just the structures that were damaged but the infrastructure as well. Communications, economy, safety, government, etc were damaged. Some more than others.

Communication - not only is it difficult to communicate with other cities (people) but also to communicate within the city itself (myself). Needs to unmet, thoughts unfinished because communication lines are down.

Economy - resources are damaged and now limited. Some areas are better off and have more resources, others are struggling to survive. Sometimes large amounts of resources are poured into one area leaving other areas desperate. For me this is usually the resource of energy.

Safety - the area itself is now unsafe. Though the initial danger is gone, unstable structures, leaks, fire hazards and unknown damages pose risks. As I started recovery and continue to do so I found other issues that posed risks to myself such as impaired balance and deteriorated eyesight.

Government - the structures that were in place to maintain law and order are not only damaged but also strained as they deal with the crisis. Some will find this an opportunity to break rules and law. Others, with limited resources, may need to in order to survive. I found this true primarily in my mental and emotional health but also physical. Emotional- regulation can difficult. Sometimes I'm not sure why I'm having a panic attack or why I'm sad. Other times I know why I'm frustrated but I don't know what to do about it. Physically, my body may not be able to handle the stresses it is being put through and just shut itself down rather than find a more logical way of handling the situation.

There are other issues that fit better into other categories but this gives a general idea. I saw the quote, written by another TBI survivor, on a website I frequent and it described what I've been through so clearly that I had to share it. I also wanted to expand on it to share more of what I've experienced."

It is a living hell. Feels like there is a demon inside of me that controls everything. It takes away my memory, my happiness, relationships, and the ability to feel somewhat like a human being.

My main issue that I realized is talking way to much..never staying on track..of course anger..my go to emotion..

Lack of self control. Sometimes feels like I'm a reincarnation. At times feels like I'm being followed and harrassed by demons.

My brain injury is 4 years old...
But that was the worst thing I ever had to deal with...
I was hit on the left side of my head,for many years....( because no one can see your bruises)
But each time the slapping got harder,and lasted longer untill it made me throw up..
But living with TBI is no walk in the park...
You lose interest in everything,
Your head hurts,makes me dizzy and full blown vertigo...
Preferably like to be left alone in a really dark room..
Dont want to talk to anyone, forget things that your doing,
Leaving water turned on,stove turned one.
Tripping over your own feet,rather not drive,hard of hearing and I can go on an on...
You need.to retrain your brain back,
And it's the hardest thing to do...
But I feel my good LORD HELPED ME THROUGH THIS....AN I try to stay as POSITIVE as ever...
I will probably never be the same,
But I did get another chance for life..

Infuriating because people think it is something you just get over

It is like your brain is a frozen computer screen that can not be rebooted. Powerless with so much power behind not being able to be used. The brain fog and brain damage.
-mak-

Leaving the best ingredient out of the meal...

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

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

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

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.

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.

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