Resources & Inspiration for Life with Brain Injury

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.

What does a brain injury feel like_

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

  1. Hello Linda,

    That’s just made me so emotional just reading it, which even makes me feel like a bit of a Plonka.

    I had my Brain Injury in 2005, and I feel like I’ve recovered so much, but just as you say, it never fully goes away, which is only something you can understand, once you’ve experienced it yourself.

    Looking back on some people that never ‘recover’, makes me feel really so appreciative of the recovery I’ve made, but exactly as you say, you know your old brain is no longer in there, as you know within yourself you’ve just made a decision that you might not have made previously.

    Sometimes it also makes me look into things a bit to much. A perfect example of this, is the paragraphs I’ve just had to scan back through and place on this bit of text.

    Is that my Brain Injury, or would other people also have to do that???

    That’s a perfect example of loosing trust within yourself.

    (Also, should there be a double oo on “look into things a bit ‘too’ much”)

    Anyway, not rabbiting on any more, but I enjoyed reading your text about brain injuries, as can help by making me feel a bit more ‘normal’ (ish).

    Best Regards,
    Stuart

  2. Ashley

    It never ends because you didn’t end 🙂 best way to think ab it.. there is a reason for your existence and your thoughts. My injury happened almost 5 years ago. Oct. 7, 2017. And I love that day for many reason but mainly bc my angels were with me and continue rooting for me as do yours!

  3. Samantha

    Nobody gets it! No family! No friends.

  4. Heidi Baker

    You nailed it. 🎯 It always takes someone who has been through it to truly “get it”. Thank you for sharing and helping others feel like they’re not alone in this chaos of recovery. Together, we can rise above. 💚

  5. Margaret Gordon

    Thank you for sharing this part of yourself. You are a true warrior and as close to a saint I have ever met.

    This insight helps everyone, now and throughout our lives. No one can possibly get through life without physical injuries. Some are worse, and some aren’t so bad. But injury is inevitable, and one’s attitude plays a tremendous role in healing.

    May you continue healing and be blessed with joy and fulfillment every day. That equates to only a faction of what you give.

  6. LaDonna Drury Bohannon

    Finally! Someone that could actually put it into words. I’ve longed for a way to find the words to describe the “different” me. Thank you!

  7. Linda Hudson

    Thanks. My husband had a stroke little over a year ago. May the family can read this and understand what us going through. Right now they don’t get it fully .Thanks again

  8. Sandra

    Thank you so much It made me cry because this is the way I feel every day at work

    • We have many difficulties others don’t understand but things often get better. I have made so much improvement just in the last 4 years and it will be 13 years in January.

  9. It sounds like he has a good caregiver in you. He is still early in his recovery and there’s a long way to go. I’m still improving even as nearly 13 years.

  10. jamie

    This perfectly describes everything that I could not find the words for. Thank you for this wonderful article.

  11. Shelley

    Thank you its all for real in words I couldnt explain survivor SAHBrain stroke ruptured Oct 21 2012.

  12. To know that I’m not alone, helps a good amount… thank you for this!

  13. >”most people who didn’t know me before wouldn’t know the difference. But I know. I remember how I used to be.” This is the most poignant thing for me. It’s been 6 years. I used to be a very gifted marriage and family therapist. I still am. People still want to see me even though my brain can only handle one third of a case load. They don’t notice, but I do. I know I used to be a “better” therapist. Thank God I can still do so well. But I remember what it was like. I remember the keen intuitional leaps. I remember putting it all together and translating that into layperson speak. I remember being the spark that made the Change possible. I am still so much good for so much. But it doesn’t quite taste as good. I am still gifted and it shows. But I know. I remember. I say the words of gratefulness. It could have been worse. I’m getting better. I know what others go through now. BUT, 6 years later, and I still remember what it used to be like… (profane ending followed by awareness of my incredible life.)

    • It has been nearly 13 years since my accident and I can tell you I made huge improvements in the last 4 years! I made some major life changes in the last 2 years and was dealing with some other big challenges in my family. I have been amazed at myself and what I was able to do. It wasn’t easy but I did it! So many times, I would say that I was so grateful that I was so much better to be able to work through what I did (even though it was crappy stuff). I am grateful! I’m sharing this because you can still get better than you are. At my 6 year mark, I thought that how I was at that time was going to be how I would be for the rest my my life. Wrong!

    • Shelley

      Same here 🙏😊

  14. Shan

    Your message spoke to my soul! You have put everything I have been feeling for 15 years into words I myself couldn’t express. When I do, outside of my family that lives with me, most don’t listen or understand. I know I am Blessed by God and my family. I am sorry you are going through this too! May you be Blessed on your journey! But Thank You From the Bottom of my Heart for making me not feel so alone even with a home filled with a Loving and caring Family!

  15. John

    TBI … you only know it if you live it

  16. Yes, our progress is something we should all
    be proud of. Congratulations for getting to where you are! I express my gratitude often to whoever is listening about how grateful I am to be where I am to day. Several years into the recovery, I thought my life would always be as it was – not very good. But I worked to get better. I’m proud also.

  17. Rebecca

    I want to thank you for your article! I had a stroke about 4 years ago and have had a difficult time explaining what the recovery is like! Your article makes it so clear! I shared it on Facebook this morning, so my friends and family can read it!

  18. Megan

    Thank you. I’ve not dealt with a brain injury myself but my brother and my oldest son have and it gives me some really good insight to what its like to deal with it daily.

  19. Heidi Baker

    Wow, thank you for putting to words what it is like dealing with this everyday. 🙌🏼

  20. Kathy

    Well stated! Every paragraph I was going yes that’s me. Thanks for putting into words what is hard to do.

  21. Leah S.

    Very well said! I wish people understood us.

  22. Michelle

    This is so how I feel, I am gone dead the old me. I am not happy I lived.

  23. Jen Randall

    I’ve never felt someone articulate what it is like to have a brain injury so vividly until now. It’s been a long road. And I’m grateful for the progress. Thank you for the time that you took to write this and for the remembering. You have no idea how this has encouraged me in my own progress.

  24. John barry

    TBI … you only know it if you live it

  25. 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.

  26. 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.

  27. Thanks sharing. Yes, I like myself also – I think this journey taught me self-compassion and self-love.

  28. 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.

    • Thank you, Robin. I appreciated your very nice note. For some reason I didn’t see your comment before today.

  29. 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.

  30. 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.

  31. 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

  32. 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!

  33. 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?

  34. Thank you for sharing.

  35. 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

  36. Nicole

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

  37. 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…

  38. Holly

    Thanks for writing this so clearly so others can understand!

  39. shawn

    Very well written.

  40. Kelly Grant

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

  41. 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…

  42. 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.”

  43. 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!!

  44. 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

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

  46. 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.

  47. Kelajoy

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

  48. 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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