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Having a Brain Injury (it never ends…)

by Linda W. Arms, June 22, 2014

What is a brain injury like?   It’s not like a broken leg.   It’s not like most other medical conditions or diseases.   It’s not getting old and experiencing “senior moments”.    It is very different although many people look at it as “oh, you’ll get over it” or “I have that too, it’s what happens when you age.”

A brain injury, whether from trauma, stroke, aneurysm, lack of oxygen or other cause, happens quite suddenly – out of the blue.   You are fine; everything works; your mind is active and full of ideas and dreams and thoughts; you walk about without a problem.   You can speak and comprehend what someone is saying while you cook or do something else.   You read, watch TV, drive, cook, solve problems, make decisions…..   Most likely you don’t think about your brain at all but it is what is making those things all possible. 

After a brain injury, you suddenly are unable to move about or think like you did before. Brain injuries vary in their effect on a person depending on the severity and which parts of the brain were damaged.    In many cases after a significant brain injury, your mind is blank without any thoughts unless you force them to be there.   You have to concentrate on thinking through a simple thing in your head because you lose your focus very easily.   You are in a fog.   When you try to think through a simple thing you feel like your head is full of thick mud or dense cotton that muffles and gets in the way of thinking clearly.   Sometimes it’s impossible to think even about the simplest thing, the blankness just returns.

There is a sense of other worldliness around you.   Your senses are muffled.   Your sense of presence is gone.    You feel you are not really part of what is happening around you.   You can’t experience everything going on around you.   Your view into the world around you is very small like looking through a little tube.   Your awareness is missing.   You often just stare off into space with emptiness in your head and in your eyes.

You have problems understanding what people are saying to you.   You have problems talking and explaining something you want to say.   You can’t find the words, the words don’t come out right, and sentences are hard to form.   You have few emotions, there is no joy, there is no happiness, there is no anger, there is no sentimentality, there is little except maybe some sadness and nothingness.

You have to hide in a safe, quiet place because the world is too chaotic for you.   You can’t go to stores, you can’t hear sounds, you can’t have too much movement around you before you feel so overwhelmed, you can’t see straight or walk right.   You have to move slowly because you don’t have the strength or energy, you have to be careful walking through doorways or passing by things because things aren’t really where you see them to be.   You have odd sensations in your head, you have odd tingling in parts of your body, you may not feel pain the way you used to.

You’re cold all the time, it’s hard to get up out of a chair or out of bed because you are so weak.   You are tired, always tired. You sleep and sleep for sometimes 14 – 16 hours a day.     You get up in the mornings and it takes hours to feel alert enough to function.   You sit there waiting for the disturbing sensations in your head to settle down while your brain is adjusting to being awake.    Sometimes you can’t get there… you have to go back to bed and sleep after getting up just an hour or two earlier.

You have a sense of great loss.   You are not the same.   For so many reasons, the essence of who you are is gone.    You don’t do what you used to do like work or drive or be with friends.   You almost don’t care sometimes because it’s all you can do to think about getting through the day with the chaos that is now part of your world. 

You feel fragile, broken.   You feel damaged.    How do you pick up all the pieces and make progress.

You think “what has happened?”, “did this really happen to me?”,  “is this all my life is going to be like?”  “am I ever going to get better?”, “it’s been 6 months and I’m still not better”, “this is terrible but I have to be grateful it’s not worse and that I’m alive”.

It goes on and on and on for months, for years but gradually you get better.    You make progress but it is very slow.   It takes years.    Sometimes you encounter relapses.   Sometimes you have symptoms you thought were gone but they are back because you are stressed or tired or over-stimulated or sick.

Someone very close to me recently asked me about my brain injury recovery and said, “When did it all end?”    I said, “It didn’t end”.    It never ends.   It’s always there sometimes better, sometimes worse.    There are more days now where I don’t think about it because I do quite well.    I am grateful for the progress I’ve made and most people who didn’t know me before wouldn’t know the difference.    But I know.   I remember how I used to be.   I haven’t gotten it all back but I’m still working on it.   Like so many of you with brain injuries, I realize how strong I have been to have gotten through all this and I am grateful I am doing as well as I am.   I am proud of myself and the hard work I’ve put into my recovery.   I’m sure many of you feel the same way.





37 Responses to “Having a Brain Injury (it never ends…)

  1. John barry

    TBI … you only know it if you live it

  2. Toni

    It’s been 4 years and this is the closest I’ve ever heard someone say something so close to how I feel! You hit the nail right on the head. No one understands and don’t even try to.

  3. Kotrola

    It’s sad but nice to know…I’m not alone! Almost 4 years later and still each day is a challenge! People don’t understand the DAILY struggles.

  4. Carina

    Indeed. It never ends – you just learn what the trigger factors are and you develop coping mechanisms. I hold down a job and have raised 2 kids on my own ( after the brain injury) they are happy and successful – 17 years on – every day is hard but you just do it. People don’t understand it because it is this invisible presence that is hard to explain to anyone who doesn’t live with it. I am a different person now but I like myself so…

  5. David Smith

    That was really a good article to read!!! Thank you

  6. Robin Tiede

    You have beautifully expressed what I have been frustrated about. I was in a car crash over a year ago, and still have no memory of the first few weeks following. (5 hospitals over a 2 month period of time) I will follow your blog and your FB page.
    Thanks so much.

  7. Wow…this is soooo true. It’s been 10 years for me. And I still have those moments….
    I will share so all those who think I am ” better” may understand what I think but sometimes can’t explain. Thank you for printing this.

  8. This….this is actually exactly how it is. No other article has ever been this accurate about this, and I’m so glad I’m not alone.

    I just wish I could find a purpose to live in this tortured existence.

    • David Smith

      I understand you William. My girlfriend & I recently just had a lil girl, it is really challenging for me, even just my relationship is really challenging for me. Most of my life has been living with brain injury, life has not been easy for me, many years I spent wasting away days working for others that I began to see that as my identity, I lived my life through others lives & other wasteful habits that I neglected to see the value of myself & those closest to me. Years later now & many trauma’s & brain injury’s life is very difficult.

  9. john

    BRAIN INJURY ? I got mine in a Head On Collision. After 40years of living with it, I came away with one bit of wisdom for one of these:
    TBI … you only know it if you live it

  10. This is great, and I’m sharing it with others. I had a ruptured brain aneurysm a little over a year ago, and this article says all I wish I could say. I’ve had a miraculous recovery and it is getting better, but I can relate to so much in this article. Thank you for writing it!

  11. Wow….I learned a lot. Would it be correct to say the survivor is left functioning as if in a dream? Still a part of , yet removed from their life….thoughts and movements at times beyond their will to control?

  12. Thank you for sharing.

  13. Amy mom explained it to me a lot like you stated. It was very hard for her to express herself, she would get so frustrated and either cry or get angry. Anger was easier for her. She felt crying was a sign of weakness. She passed from Cancer not her brain injury. I just felt so bad got her. Thanks for sharing, mj

  14. Nicole

    Thank you so much for sharing this. You explained how I feel, but could never find the words to express it.

  15. So very informative. Thanks. GPA

  16. This does SUCH a good job of describing what I’ve experienced! I’ve tried to tell people, but will share this and HOPE some of my family and friends will care enough to BOTHER reading it. Sometimes, I feel like NO ONE understands or CARES…

  17. Holly

    Thanks for writing this so clearly so others can understand!

  18. This is so accurate! I’ve been 30 years post TBI. I’m still experiencing improvements when I find an area where things aren’t as good as they used to be – and specifically focus and work on it. It’s still possible as long as you plan to keep on living!!

  19. shawn

    Very well written.

  20. Kelly Grant

    Absolutely perfect … Coming from an 18 year TBI. I will share. Thank you very much.

  21. Thank you for such a wonderful explanation of TBI. My son is a victim and this really will help Him and others understand the effects of the injury and long road in recovering.

  22. What a wonderful expression of an inner experience that no one “gets” who hasn’t had it. Your words ” You have few emotions, there is no joy, there is no happiness, there is no anger, there is no sentimentality, there is little except maybe some sadness and nothingness.” really touch me. And also your statement about essence not there anymore. I feel like there is a decision I MUST make and then things will be better, but I have no idea of what the question is before the decision.
    Yes, I am doing neuro feedback sessions. I think they are helping. But after a year and a half I say to myself, “This is probably as good as it gets.” Maybe yes. Maybe no. I just don’t know.
    Occasionally, I meet a limitation I didn’t know I had: like driving 4 hours on vacation and being laid out the next day. And then to really get the point, driving 4 hours back home and the next day being flat on on my back all day long.
    It’s nice to know that some others “get” it. But I meet so few. Except the guy that had the stroke 8 years ago, and my neuro feedback therapist, and of course, you guys…

  23. Paul Hoffman

    Let me join the others, in saying you captured the stroke experience better than I could put into words. Reading it brought back memories I had forgotten, especially how I disassociated myself from myself, and observed what was going on as though from afar, with little passion or feelings about it one way or the other…except I was surprised to find myself alive…in the middle of the night as I started to lose control to roll over, I chalked it up as the end…didn’t awaken anyone, expected to “wake up dead.”

  24. Thank you so very much!!! You have so honestly and accurately described my life/world….I have verbalized is what I am experiencing with my brain injury, but your words give so much insight!! Thank you again!!

  25. Christine

    Thank you so much for expressing what so many of us feel but cannot verbalize! It’s also helpful for family and friends who think we have no problems after the brain injury. The one thing that resonates with me is that I am not the same person I was before the aneurysm. I still mourn for the loss of that person and the reality that she won’t ever come back!

  26. Joanne smeeton

    Thank you lovely words explaining so many of the thoughts and feelings my husband is experiencing in his journey to recovery , will share so that others can start to realise to some degree the daily struggles u all experience after brain trauma x

  27. Very well written, I can identify especially with the employment too
    If you write any more I’d be interested to read it.

  28. That was great!

  29. john

    Mina K:
    My question is, did you ever feel ‘invaded’ when talking to other people ? By that I mean, people who can see that you are ‘weak’ in some way, and they seem to try and take
    advantage of you????
    I myself had this feeling many times when I was around certain types
    of people in the world. After my own TBI, long ago, I was termed ‘WELL’ and told to go out and do something with my life. Thus I tried and achieved quite a track record of things such as a job history which reads like a phone book.Life quickly showed me that I was NOT ‘fine’,
    and I had NO support group to fall back on.

  30. Kelajoy

    That was right on and so well written. Thank you,.maybe one will understand now.

  31. trina bradlee

    Thank you for your Brain Injury blog Mina. It helps so much just to know that there are other people who understand…Trina C. Bradlee

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