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

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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.

I describe my BI as if my mental filing cabinet was shaken and the files were all put back in a complete random mess. I've spent the last 18 years reorganizing the filing cabinet and amazed to still find misplaced files. Speech is still difficult.

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 feel like nobody understands and as if they think I'm pretending to have the symptoms .

I feel exactly the same way. I look the same on the outside but have such extreme difficulty dealing with my day and nights. My brain injury is from a 2nd concussion and people do not understand why 11 weeks after, that I am still having issues and not back at work. It's not like I had a stroke or have been in a major car accident.

Brain Injury is...

Looking down at your hands, and not recognizing them as your own.
When you speak, and your voice sounds unfamiliar.
Being unable to have a simple conversation because your mind becomes emptier than ever before after only 5 minutes.

Brain Injury is learning to live a life that doesn’t feel like your own. It’s an ongoing battle of feeling like somebody else is driving and you’re just along for the ride.

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.

Was in a fog for a long time maybe 3 or 4 months. I was an engineer and used complicated computer programs, including Autocad. Lost all knowledge of them never to return. After seven months I became an out of control angry person. The doctor prescribed Celexa (an off label prescription). It worked wonders. I've been taking it 20 years. Tried stopping it twice but uncontrollable anger returned after 3 or 4 days. The left side of my brain is damaged about 15%. Problem spelling and higher math functions.

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

Sympathized. People just don't know how this thing works -- worse, no one really does -- and ancient misperceptions are the norm. And that it's such a personal experience doesn't help either...

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 know how people feel with brain cancer as I've had 3 0perations for the glioma coming back followed by a stroke and partial blindness all cause of epilepsy and I worked fulltime I feel I should have not had surgery as I feel my brain altering it's pathways which scares me it's coming back

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.

2015, I died in my mind. Now I have no idea who I am. I knew what I was. But she is gone. I see the face but the brain is off. MIA Missing In Accident!!!!!! I have changed 180 degrees. I hate the new me. My voice, foods, smells, lights, noise, music. I hate who I am now!!!!!!!!

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.

This is me. + I used to be such a social person. Now I am a homebody.

Totally relate to this - you feel so bad inside when it is your husband and children.

Isolation, emotional roller coaster, suicidal, invisible, a different person, over react, angry at doctor's lack of understanding, miss normal interactions and activities

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

Some days I feel like I am wading through waist high mud, trying to complete tasks that used to come so easily to me, I never gave them any thought, and it doesn’t matter if I’m told I’m doing a good job, I still feel like I’m doing everything in the slowest gear and I can’t verbalize how worthless I feel.

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.

My most recent concussion (probably number 10 overall) has been by far the worst. I had a seizure of some sort and hit my head on a steel tubular window frame as I went down. A doctor was present when it happened and performed CPR as she couldn't find a pulse. I awoke with severe tunnel vision and, loud ringing in my ears (ringing is still there constantly) and obviously a bad headache. Over the next month things actually deteriorated to the point where I couldn't even speak a complete sentence without stuttering and slurring my words. My body had trouble regulating my temperature as I was always freezing even when it was 95 outside. My actual body temp was constantly running between 95.4 and 96 for about 4 wks. I developed an eye twitch in my right eye which makes my whole field of vision shakey. Although things have improved most symptoms return with any physical activity or even if I just get tired. I get confused even just walking the aisles at the grocery store. The sound of the vacuum cleaner or someone coughing makes my brain feel like it's seizing up. I start vestibular therapy this week. At this point just hoping for a little relief.

Vestibular therapy really, really helped me be able to tell where my body is in space. I’m more coordinated. It’s a relief.
Good luck to you, it’s a struggle to live with brain trauma, I know. Hang in there.

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 “

I am a survivor of nearly 38 years. The day I received my "Blessing" was 7/17/82 from a high speed mva. I was in a coma for10 days

Walking through a field in the dark. You don’t know where the holes are until you fall into one.

YES. Like a couple days ago when I went for the word "sauerkraut" and there was just an empty space. Just...empty.

Today marks the 29th week anniversary of my scooter accident in which I fractured 6 bones of my skull, suffered a concussion/TBI, and have the lingering effects of PCS. To say that the recovery process is slow would be an understatement. I've tried to be patient with my recovery but that's easier said than done.
To some degree I feel as bad today as I did 6 months ago, minus the pain from the skull fractures. The headaches are horrendous. The dizziness and mental fog are problematic. The confusion and memory issues are challenging. With my wife's ever present support I have been able to manage my symptoms without losing my mind. It has been a struggle at times and I am thankful for her being there for me.
I am comforted by this post to know that I am not alone with this struggle and will continue on my road to recovery no matter how long it takes. Thanks for being there.

I am 52 years old. I had a massive stroke about 2 years ago. My boyfriend kicked me out of where we lived about 8 months after I had the stroke. 2 months in the hospital and rehabilitation and 6 months being home. I lived in my truck for a year and a half with 2 dogs. I finally found a home for the 3 of us to rent in a different state. Before my stroke I had a very labor intensive job. I could out-work most men , was very strong , skilled , and capable. I had a strong work ethic and felt completely confident in work as well as most everything else in my life. Since my stroke I have been desperately trying to be the same person that I was before the stroke.
To my devastation I am now realizing after about 2 years that it is impossible....no matter how much I wish it and try to get it back. I am forced to accept the fact that I will never be the same. I have lost a lot of my balance, coordination, strength, and energy. Processing information, both coming in or from my own thoughts is difficult. Slow and exhausting. My verbal skills have changed, words are different, hard to understand. I am forced to speak slowly and carefully which is not easy or natural for me. My speech declines dramatically if I'm tired or it's late or for no obvious reason at all. I am uncomfortable in most social situation. I feel ( for lack of a better word) 'retarded". I am handicapped/ mentally challenged but its not obvious in my physical appearance so any transition in body movement or maneuver feels clumsy, awkward, stupid, and just all wrong .

That is a huge debilitating problem for me right now. I'm still having trouble accepting the permanent changes that are now my life. I keep trying to be my old self and just end up being depressed, overly emotional, and exhibit bizarre ( almost psychotic ) behavior. I am angry about every " mistake" I make no matter how small. I am so critical and unforgiving of myself about everything, my speech , how I do things , how I walk, work, think.... I feel ugly, fat, just totally unworthy , undeserving and just very unimportant period. I have been suicidal twice and hospitalized both times. Happiness has turned to hopelessness,and not feeling that anyone really understands how horribly and completely this has changed everything I knew about life and myself . I get myself so worked up imagining people around me watching me, laughing at me, and having conversations about me. All negative of course. I get to the point of being unable to leave my home or even step outside. The thoughts happen at random times, tend to last days or even up to a week and I am completely unable to shake what I am feeling and it all seems to start with my feeling of inadequacy , overall physical inabilities , and shame . I beat myself down because they have no idea I wasn't always this "lame", or I assume have any interest ,understanding, or empathy for my situation. Damaged, expired, pointless. This is how I feel.

My journey to TBI / EFD and likely CTE - took me a lifetime of severe knocks to the noggin, thanks to a farm-raised work ethic and play hard approach to life. (8 MVAs alone, 12 other impacts & prolonged chemical exposures)

But everything else you saidis exactly how i feel every day, I sit here after midnight, insomnia full swing, balling my eyes out next to the boyfriend (love isn't enough) who told me last week that I have 2 months to move out permanently.

My heart breaks for you.

I have had several bad head injuries.Early on it was football and other sports related head concussions. At least 10 concussions.....back then we played through them even if our head was ringing and balance was off. Not much was known in the 1970s about sports related head injuries. In 1990 I had a devastating one slipping on ice and busting the back of my head open on the pointed corner of a parking lot stone. It changed my life almost instantly in negative ways and just when I thought things were finally going to get better I was a passenger in a major auto accident in 1995,in both of those injuries I was initially dead . Brain injuries are definite life changers and in a mainly negative way. Im not the same person I was 28 years ago. Im in a permanent fog with limited sense of taste and smell. Food is blah to me now, its just something to chew on and not enjoy. I have an impulsive and explosive temper and it has driven those closest to me away. I used to be married and own a house and had a real good job. Im now on my own and no longer associate or socialize with people.I cannot hold a job, or seem to be able to relate to people enough to form close friendships anymore. My companion is a pet cat I got while volunteering at the Humane Society. Memory is getting worse as time goes on and now I have had episodes where Im not sure where I am for periods of time so I have to sit and wait for it to pass....and what if one of these times it doesnt pass? Depression and haze is my life these days.Positives in my life? My cat is a positive and the dogs and cats and ducks and geese and birds other animals I see out walking are positives too. They boost me on hard days.And also this has drawn me closer with faith.I dont go to church or bible thump.....but I do have a belief now where as before I didnt and so thats a positive too And tomorrow is another day.

I've been living like this for 10 years now. I feel so isolated and neglected. My family has never taken the time to even talk to my doctors or understand me as I am now. I used to be so smart. Now I'm lucky to be able to add 2 numbers together. In the beginning when everyone thought I would die my friends and family were right there. The last friend I had...my best friend at the time. ..told me in so many words that I was no longer a good friend back and haven't heard from her in over 6 years now. It would be so wonderful just to have someone hug me. I'm 47 and frightened that I may have to live another 20 yrs like this. Thanks so much for allowing me to vent here. This is the first time I have ever gotten the words out.

Hi everyone I'm not too good at tech stuff.

I was on my way to the store one day and from what I have been told since I don't remember anything I got hit over the head with a pipe in a robbery attempt. Woke up seven months later in a rehab and that was the start of my journey.

When I couldn't tie my shoes or put a shirt on the depression kicked in. I came to the point that I realized I would never be the same person I was. I'm just trying to go on with my life as this walking zombie and try to keep my head up. At least that's what I think I'm doing. I can't really figure anything else to do. I'm alone other than people like yourselves that let me know I'm not alone on this.


Hmm, I wonder if you're the same Carol whose comment on the auditory sensitivity page saved my psychological bacon about six weeks ago. If you are, THANK YOU.

I know digital and physical are two very different things, but:

Breathe in
Take it easy and keep the faith.
Breathe out
Take it easy and keep the faith.

I'm sorry your friend was so insensitive to the effects your brain injury had on you. A support group with people who have to deal with the aftermath of suffering from brain injury could be helpful. Having at least a therapist to get you started.

Omg! Could have me writing that. Difference is I’m coming up on 3 years. I also had a very good friend, one that was absolutely there for me in the acute stages- yet during a recent “outreach” I made to her, I got nothing. When I finally did hear from her, I was TRYING so hard to explain how much I was hurt. At least I was aware that my “tone” was not appropriate, and apologized in advance- explaining the end of a day is difficult for me- and I know I was sounding nasty but didn’t intend it. She quipped back- “Yes you are! And I’m done! We will talk tomorrow!” She hung up and tomorrow has never happened. My heart is broken, I feel horrific I hurt someone I love and counted on each other through so much trauma (not just my injury). Result? I’m being so withdrawn for fear of having similar reactions from others I love. No worries, they don’t reach out to me anyway. I just feel soo alone! Thanks for sharing your story. Yes, I have a TBI, no I’m not crazy- yet.....

I was in an anoxic coma for a month (total lack of oxygen to my brain). I had to learn how to walk, talk and the cognitive issues I still suffer from are highly variable. I had a high functioning job, was wee educated with a BA and MA, and a great life. After the brain injury, I essentially "died". My biggest challenge is the complete lack of support I get from my entire family. They are also not even willing to learn anything about the social, cognitive and physical challenges that I face. I have found it extremely difficult to find information on this subject I would be so grateful if anyone could give me any ideas. Thanks so much.

Dawn I get it. It is hard but I relate and I stand with you!

I know I have mashed potatoes for brains and do wish I could remember things as they were.

My brain is like a hornets nest....and somebody kicked it

i currently have a boyfriend who was in a serious motorcycle accident 5/172017 he was supposed to not survive its been 5 months later and he is walking , talking, and alive. but he has. TBI. he has been to a few rehabilitation centers in the past 4 months and has impoved. bottom line is he has TBI . i think he is ok but i know he is not. i have a hard time trying to understand this most of his damage is in the frontal lobe . i know in reality i lost him. but im trying to understand the new him. i think he knows me and loves me but in all reality with his short term memory that all can change in a matter of 10 min. i am so confused i dont know how to handle this or what to expect. i feel like im living in denial and all is ok but i know its not..i plan on being there for him no matter
what but i dont know how. i cant read his mind i know nothing about brain injuries i need help on learning more about this. its been very hard he doesnt remember me at times and is confused and i dont know how to help him. i try not to take it personally but it hurts me . i just need someone to help me understand the reality of this and i dont know how..any advise or anyone i can talk to please i would appreciate it.. im lost and i dont want to lose him.. i want to understand him.. ..ty ...i dont know if i can leave an email address first time on this i hope somone responds

Omg. This is me. Have a boyfriend for 10 years. I am dealing with almost identical situation and feeling same emotions. I know exactly how you feel. Its all so overwhelming for the family also. Sometimes I feel its a death while he is still living. I will surely keep you both in prayer. As that is all I have. Thank you for helping me see Im not alone either.

My boyfriend had an accident two weeks ago tomorrow. I know he has a long road ahead. At this point he does not know me or his dad. I've been trying to learn all I can. I wanna be there for him always but what if he never remembers me or does not love me either. I'm his biggest fan so what can I do that will benefit him the most? He been amazing and I wanna be just as amazing to him now. I'm scared. Any advice

Hi there
My partner of 16 yrs was involved in a 1 punch attack that resulted in 105 days in hosp/rehab..he had to learn to walk talk eat etc...its frontal lobe damage that is the hardest to live with...hus emotions and change in personality... my biggest advice to you is to find you new normal and build from there...in a way you have to grieve the person they were...we are 2 yrs since injury...best of luck to you both .

I am just like your boyfriend. I had a really bad motorcycle accident on September 4, 2017. They say I should have died but I didn’t. Instead, I got a TBI. Life is so hard for me and my family since the accident. I have a wife that tries really hard. Daily I have major issues and my wife is just there to help me. I realize her struggle and try hard to let her know how much I appreciate her.

For you, just be there for your boyfriend. Research and learn about TBI. Understand he will have major memory loss, not want to do things. It’s hard waking up one day and your life is forever changed. Everybody wants a break but you don’t get one.

Michelle I just read you post and it was like I was reading something that I could have written. 4 and half weeks ago my boyfriend and I were in a motorcycle accident I had minor injuries but not him...anyway he was in a com for 9 days and suffered a stroke while in the coma. His TBI affects his frontal lobe also. All the same things like you said with your boyfriend-short term memory loss I am so afraid that he will forget that he loves me or who he is now with theTBI won’t be in love with me. Everything is so emotionally difficult I am his biggest advocate I want to know everything I can to help him and be good to him and help him feel comfortable and hopefully happy once again.

After TBI, you are a computer of which the hard-drive is loaded with 5 TB of precious data, but the RAM is broken, and the Processor is also damaged and terribly slow slow slow slow slow ... Now do what with 5 TB of inaccessible date ?

Often like being thrown back into childhood. New tasks are difficult to learn and sometimes scary. Living in a thick fog

Its worst lasting effect for me has been my problems with short-term memory. I HAVE to use a memo pad. Of course just HOW MANY phone numbers can YOU remember off the top of ur head? But then too, there are things like what did I come to this store I'm in to GET???