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

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Like my legs are made of clubs. You probably don’t even think about your legs when you’re walking. Mine are big and clumsy.

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.

So very well said. My injury was only nine years ago. Like you, 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."

A continual blur with both brief and long interruptions of confusion, forgetting, and hoping that is never met with a never ending sense of visually blatant vulnerability to everything and everyone as if I'm a child that cant reach adulthood.

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.

Like your old life is at the end of a long tunnel and no matter how much you try to reach it, the tunnel just keeps getting longer with each step forward.

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

After the brain injury, needing to write everything down because I'll forget has become a habit and maintaining friendships is also difficult. Ines

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

Brain injury is like walking through mud when you're not even moving and trying to turn the sound down with a remote with flat batteries in it.

Awesome description

Not been able to do all the things I took for granted.

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..

Like I’m speaking a different language in a foreign country.

Infuriating because people think it is something you just get over

Or like me, you’re accused of being
manipulative, lying, instead of just recovering from a brain injury! All by your “family”. Maddening.

Yup very, very sad but true. I was berated by family for not being the same person they were used to. Its horrendous

It's a tough road for sure. I can relate to all these posts. For over 30 years I've learned various coping mechanisms to get me through the day and keeping my spirits up by not focusing on the person I was, but setting goals to be the person I want to and can be w Limitations. I worked very hard and have too come to grips w reality that it will never be the same, but good in so many other ways. Be Strong folks. We have each other!!

Thank you!!!

want to change my name as i am not who i was.sucks when yu know yur gonna lose it on someone possibly before yur finished living.feels like a butterfly in a jar in my head trying to get out.sounds are getting increasingly painful to hear like sirens and trucks beeping backing up

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.

It's as if you are the walking dead haunting your loved ones. Some times they see a flicker of the part they knew but only for a brief moment.

Really good description. Its like they see that flicker but when it passes they get angry at me, as if I'm hiding the real me from them or something... smh

haunting your loved ones is a great analogy.the only people you are sure would listen and understand you actually go the other way cause they dont believe or accept that dozens of concussions has changed your thoughts and ambitions

Leaving the best ingredient out of the meal...

I was 23 years old when my accident happened April 2, 1996. I had left frontal lobe damage. I have right side weakness, short term memory issues, fatigue, some brain fog, and alot of physical pain. I met my husband after my accident. We've been together 21 years and married coming up 18 years. Have a 19 year old son together. Some days are great and others I feel so completely drained. I get told that I'm lazy alot. My biggest supporters where my parents. They have both passed away now. My husband trys but doesn't seem to really understand. He just sees that I have a little bit of a physical difficulty. Not anything underneath. I've been able to live on my own since 3 years after my accident. I'm not dependent on anyone to help me on day to day responsibility's. I do reminders on my phone and notes around the house. I just wish I could wake up from this fog.

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.

Yes absolutely agree! And me too, my TBI from bicycle accident was 1982 and nobody ever said brain injury to me or got me help afterward. I found about it by God leading me to see a book on the subj in a bookstore I was working in. I was diagnosed by a psychologist a few yrs ago whose brother is a neurologist and she recommended I see a neurologist. She said I have residual effects of TBI. My first appt with a Neuropsychologist will be this year, 2021! Don't give up and God bless you

To not know why people treat you bad, as if you are the culprit instead of the victim hurts to your core. But worse is when you learn what happened and can't get medical help because it's not NEW. It's new to you and you need help sooner, not ignored as if it will disappear.

progressively getting worse is the same for me.after all my research i have realized a brainscan will help my diagnosis however my doctor will not give it.after mentioning a brainscan my doctor asked me if i was smoking "synthetic marijuana"no sir i was completely k o d four times prior to grade 8.maybe thats why i rely on pot daily for 42years.i hate to say this but us head injury peeps are on our own somewhat,this gives me peace somewhat thinking that i need to fix this myself cause i tried extensively and we are absolutely misunderstood

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.

My heart cries and prays for God to give you gentle acceptance (not giving up) and deep sense of appreciation for the person you are now, which could be your true self. What you can do, do. When you've done the best you can, know that you gave it your best and don't allow harsh critics to ridicule, condemn, bully or berate you. Inside of you may be an artist, writer, photographer, musician, singer, friend to the friendless, animal shelter volunteer, nursing home visitor. If we reach one person's soul and lift their burdens just enough for them to take a deep breath, press on, and hope for a brighter day, then we have performed a miracle in their lives. Kind words and small actions can have a profound effect on people, just when they need it most. Sending prayers..

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

Its like your file box got dumped out and someone shoved all the files back in out of order. The files are still there but good luck finding one when you need it

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

It is alright to grieve the changes. I am the wife of a TBI survivor and I also grieve the loss of the husband I had and accept and love the ‘new’ husband I have. At time I feel guilty that I feel frustrated or wish I had my ‘old’ husband back because I know how bad he could have been and should be only grateful at how well he is doing. I think we are all connected in this journey and life has so much to offer - even grief can be good to transform the new you. Best of luck with the new you. You probably are an improvement from the old you, however it is ok to grieve the old you.

Hello Dawn. My husband is 15 yrs post treatment injury, leaving him with TBI for all intents and purposes... I feel like I need to keep educating/ reminding myself of his limitations and personal struggles to keep strong and supportive in the face of the huge challenge and grief. Our lives have shrunk to just us with limited family interaction.. it's a life sentence..

Slower in everything ....may appear to others as perfectly normal but not....forgetful in all things... believing I’ve completed a task but haven’t... people not understanding that I have deficits

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

I had an infant tbi. Glasgow scale of 8. I'm 38 now. I have never been able to reach my goals and am alieniated. I had dirt in my wound that hads deformed my skull. Honestly they should have put me down because when you peal a rotten onion it makes you cry and it's just layers of rotten. And it's getting more rotten everyday. O boy thanks Mom.

Help me! This is happening to me and I feel the decline. My dogs and daughter are all going through this but no one will listen. I can barely react but my vital signs are fine. I wish this would killer now. My body
Is going through anxiety and terrified but I cannot react. I’m slipping into it by the minute. Toxic mulch, mold or lead poisoning. I have strong emotions but I can’t display them. Everyone says I’m fine. No one helps me.

After 19 years I've discovered there is no healing From this.. Only ADAPTING to the massive uncontrollable unforeseeable changes, and that's only if one's strong enough to do so.

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.

It’s like reaching out to something you can see, but realizing it’s a hologram. You can see it, but you can’t actually grasp it or communicate it to others. You know it, but you are unable to say it. The simplest words... “car” “pencil”... You can see it, but you can not find a way to vocalize it. You can no longer make words happen...

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’s so helpful others are experiencing this or have. I hope things have gotten easier for you. I’m just starting my journey of brain trauma and all kinds of crazy days. Give us strength!

out of sight out of mind,sometimes in sight but out of mind. difficulty putting things to perspection.

Sounds like me

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