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

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

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.

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.

Isolating

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

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.

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 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.

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

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

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 ?

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???

Like being a child again. I went from straight A about to graduate adult college senior who just landed my dream job to a month or two in and in danger of not keeping my job or completing/passing. I can't take light, cant sing songs on the radio, stutter, and struggle to get words out or do my work. And when I make myself work i an nauseous, dizzy, and my brain hurts for days. A dangerous traffic felon that shouldn't have had his license returned stole everything i have given up years to give my child and in an instant with an illegal left in front of oncoming traffic.

I had a car accident on February 2nd and I don't remember the accident and a lot of things after it. I was attending school at the time. I have lost my short term memory, my confidence, and my family does not understand. I wish I had a way to connect all the pieces. The headaches and the vision problems are the worst. Not to mention the light sensitivity. I really do hope that one day we will all find a way to cure this problem. I used to be a very confident hair stylist. Now I am just a person who stays in the dark. 

Hard to live with, it is a <-hidden-> disability and it doesn't matter that the person with the hidden disability has it, they just perceive me as a (bitch) or rude...

I slipped on ice and hit my head in two spots and was knocked out cold. Not sure how long I lay between my front garden and car on the coldest day of the year in the dark. No one spotted me ... I finally came to and crawled on my hands and knees up the stairs, across the porch and into my house. I called my husband who came right home, put ice on the bleeds and drove me to the hospital. I ended up with a brain bleed, severe concussion and a torn left rotary cuff. The bleed dissipated, I had to walk with a cane for months and then the long road to recovery began. I looked normal but knew I wasn't right and most looked at me seeing I looked normal expected the same or more because they couldn't see anything wrong. It has been three years now and so much has happened. The accident brought my daughter closer to me and my son further away. I lost my job, got a new one, had to fight for my father's well being, then lost him at 89 yrs. of age. Shoulder nearly froze, therapy 3x weekly, memory loss, hearing loss, certain processes that used to come easy were now very frustrating and I repeat myself constantly and sometimes more than once in minutes. Continued trips back and forth to the specialist, MRIs etc. then I became diabetic and tore my MCL in my right knee and have no idea when or how that happened. More therapy, a custom brace on order and each night I would go home and crash. Too much time on the computer pretty much shut me down daily so I was little help to the hubby and our relationship suffered. I got my diabetes under control am off the pills and only now am I able to really understand what I have lost. All TBIs are different, some more severe than others. Just recently I met someone who looks fantastic and he suffered a TBI 1.5 yrs ago, was in the hospital twice as long as I was and he only lost his sense of smell. I also lost my photography knowledge, my great love, a wonderful hobby and something I enjoyed my whole life. Family and friends are not as understanding of me and my limitations and some are cruel and many are having less to do with me. I have to be on guard, not share, and not be myself and I hate it. They don't believe me when I say I look fine but I am not 100% and never will be because this is what I see and feel right now. I am lucky to be here and am trying to cope each and every day and just want to be loved and remembered for the person I was and accepted for the person I now through patience and understanding.

Its like being in a different country. Everything has changed. You don't always know what they are saying but you know they are talking to you or about you. You don't remember where home is and can't get there. So you just wonder.

Beyond words....I have lost it all and work diligently to get it all back regardless.  One valuable lesson for me ~ who my friends truly are.

~ Beth S.