Lost & Found: What Brain Injury Survivors Want You to Know

Barbara J. Webster, Lash & Associates
Lost & Found: What Brain Injury Survivors Want You to Know

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Posted on BrainLine July 28, 2011

Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission. Click here for more information about the book.

Comments

I had a craniotomy in 2010 to remove 2 meningiomas.  Because of the surgery I lost most of the sight in one eye, have momentary lapses in awareness, have difficulty in situations where there are a lot of people or a lot of stimulus - it seems like I can't process all the information.  Also, after being in those situations I get migraine headaches and am taking Zoloft for depression. Just went to a psychiatrist for cognitive testing and it's his opinion that I have an anxiety problem and should just force myself to put myself in situations that are overwhelming to me.  It's making me feel even worse about myself and that I'm a burden on my family.  I'm very grateful that I just found this site so I don't feel like I'm all alone and it's not all in my head, so to speak. Thank you. KM

Does anyone have information on the long term effects and PROS and CONS of using PEEK Cranial Implants?

I'm a brain cancer survivour. We didn't find out about it until my tumour had hemorrhaged. We didn't even know it was a tumour; it was diagnosed as a cyst before the hemorrhage. After surgery, radiation, and chemo, I couldn't explain how everything was. Everything was caged in. Even doctors didn't understand why I couldn't say how I felt. This makes complete sense, and describes everything that I go through now. Without that 10th of my brain, it will remain this way.

Thanks, I am tbi and suffer from seizures for over 20 yrs. now.   Main thing I hear is why do you lay around in afternoon or get sick so much. I try to ignore what people think, but it reallyhas  bothers me over the years.

Amen to this...... This is exactly how I feel.

7 months ago I fell. TBI diagnosed with ADHD also discovered. I am not, nor expect myself ever, going to be the same.

I want to print this and give it to family & friends...my symptoms are NOT my imagination....wishing everyone understood is....

I'm glad to read this.  It reminds me to give myself a break.  I'm very very hard on myself. . But I can't remember which way to turn to get from the grocery store to my friend's house. (Yes I've passed my driving test since my injury.). People think I'm lazy because I am on disability.  I don't remember anything I read.  It's depressing as hell. 

Thank you, from all of us with Chiari Malformation and Intracranial Hypertension.

After a month long state of severe headaches and a clean cat scan which should have been done with contrast, my cerebral venous sinus thrombosis caused Sagittal sinus to burst do to a clot. At 33 always exercising and eating healthy not smoking this is what happened. Somehow I survived it and appear to be ok physically. I just suffer from soreness and my stamina isn't the same. I never got tired or sore from the gym. Now it kicks my butt. 

I just found this site today and I'm learning so much.  I had a TBI when I was 10 and have a plate over my right frontal lobe.  That was 50 years ago and the only thing I know about my injury is that my parents were told that I was retarded but they weren't sure to what degree and that I would have epileptic seizures.  I almost died and had bone fragments and shale rock embedded in my brain.  I was very different after and told my mom that something was wrong, something was different and something was missing.  I couldn't control my emotions but she wouldn't talk to me about it.  I have fumbled through life without having any help whatsoever and have managed to alienate 2 husbands and my 3 daughters who I love very much.  They won't have anything to do with me.  I have been struggling to try to save my relationship with them and everything I did was wrong. I've never discussed my brain injury with them until lately and they think it is a bid for sympathy and was the final straw for them.  Finally I am going to seek help.  Thank you for this site.

I am not Faking it!!!!

These hit home with me, I'm really thinking of posting this on my dorm room door. I cracked my head open the senior year of high school and got a concussion, since then I've had multiple head injuries and a month ago sustained another concussion. I'm a college student, and I had been doing better cognitively but after the last concussion it's like I'm back at square one. We are having to retrain my brain for everything, and it is beyond frustrating to wake up each day and have people judge me for not being able to "be normal". It's kinda comforting to know there are others going through the same kind of thing.

I am so glad to have found this site. I suffered an anoxic brain injury when I was 19. My personality changed. I wasn't diagnosed with a TBI for over a year. I was fortunate to have had therapy and been shown some useful tools to help me with my everyday life.

I am a 31 year survivor of severe TBI, thank you~

Wow, I am so grateful to have found this website!! I have been doing so much research after I got hurt. I had 2 concussions within about 3 weeks of each other in the late summer and early fall. One severe one to the front of my eye/head and a mild one to the back of my head. A lot of my symptoms were pretty delayed, not presenting themselves for weeks after I got hurt. Now I struggle with all my symptoms and I have recently developed odd  pressure and a stutter. Some of my friends think I'm faking, but I wish I were. I have no control over the stutter and it's inconsistency. My scans show nothing and  I just want to be seen as who I am, I don't want this stupid brain injury to define me, I don't want to be pitied, I just want to be me. This site looks like a huge help, and hopefully will help learn more about my injury. If anyone has any adivce to this exhausted college kid, please feel free, I need all the support I can get these days. ~Robin

I found this site today. and it left me in tears. I had a TBI in 1998, I had several significant concussion before playing sports, many falls followed, seizures, constant migraines. My wife divorced me. My friends called a malingerer and left, only my children stayed. Medical treatment was poor until three years ago. For the first three years I could not speak coherently. I still have trouble and live below the poverty line. I am now treated for the migraines and for the seizures but not for the head injury.  This year is the first year, for a whole number of reasons, I have been able to live on my own. I have not know what my future is or what to do.  I am more than glad to have found this site, MORE THAN GLAD!

Thank you for the comments ! Its been five years since my wife had her brain tumor removed (we are the lucky ones) THE SURVIVORS !!! Sometimes we can forget ! or just get caught up in the daily grind of life and after all the stressful situations we faced as a family, We can forget that we are very lucky to get through this very tricky stressful time of life These are life and death situations (There's no instruction manual to follow) Just survival mode I know my wife now suffers from pain (i admire her determination) We are all picking up the pieces and trying to get back to that place we once called normality Be positive and you will find a good place The weekly Neuro physio Trips have and still are very helpful (Thank you Nikki x) i suggest anyone who has has surgery find one of these amazing physio's, They can help Also find a Doctor who deals with pain (if required) The British Pain Society Reading some of the stories (not all as i am probably the most impatient man on the planet) has given me a new insight in the way my wife feels i am sitting here writing this feeling very selfish, as i have been given a gift of keeping my wife alive, and all i have been doing the past few days is getting grumpy and feeling lonely due to the fact she needs her rest and the situation that has landed upon us (I am am truly sorry ) We have just moved house and for a person who has not dealt with TBI that can be stressful enough ! She is the most amazing strongest person i have ever met and i love her deeply Now i need to remind myself, that even after five years she will continue to need the patience and support required for a TBI survivor (i will find this patience from somewhere) She is my everything and i would be lost without her xxx For my wife Keely x
I received a TBI 13 years ago. I was a single mom. Everyone and everything I knew to be real was history. Even my own children left me to fend for myself in this ugly, ugly, world. I have no memory & no sense of time. Can't tell you about the births of my children, or even my grandchildren. Recently, w/o any eviction notice, 3 women dragged every memory I owned onto the curb where passersby, & the women themselves kept whatever they wanted - I was in the hospital, no one called to let me know. My only friends are three other disabled people...they were physically assaulted for trying to help me do what I have never been able to do since that car accident robbed me of my life. Because the 3 of us who have brain damage spoke irraticly, events out of order, one FTW officer said to me, "well, if you are brain-injured, how did you just use that legal term?" lol The mother of the other two mentally handicapped friends wanted to file assault charges because the aggressive, non brain-injured party, was only given the lightest misdemeanor (a ticket), I tried to help by calling the detective handling the matter and even his Sgt. superior. The mom was told that I must not be a very good friend to have dragged then into this case. Evidently, we all have different abilities and disabilities. They suggested the charge of "perjury," for lying for me! The Sgt. told me I was "like a spoiled kid throwing a tantrum, holding my breath till I was red in the face, but they still weren't going to give me my "way." So, for wanting justice for the assault on my 2 friends who are mentally disabled as I am, The most I got out of the attempt was another verbal beat-down by the law enforcement that constantly tell us to call them if we need help...lol. I can just imagine how this will go over in court if I don't get a very sympathetic lawyer real soon!
I'd love to know if anyone on this site has suffered a brain injury and completely divorced themselves from the family who loves them. My niece is recovering from a brain injury and has chosen to remove me from her existence. It breaks my heart each and every day and I am trying to better understand why and to remain openhearted to her needs. The pain for me is that she allows others into her life yet not me, the Aunt who loves her so very much. Your insights are very much appreciated.

Great article! It is obvious that many of us connect with the symptoms and find relief that others are or have experienced what we have or are having. But more than that, this site brings all of us together with a common bond of losing what we once knew and struggling to understand or accept who we are today. It I has been six years since my TBI and I still struggle with living in the new "me". Yes, anger, exhaustion, confusion, fear, loneliness, all those things I still struggle with. I describe it as living life one step behind the rest of the world. Or having a dimmer switch turned down to low. I was an active, fun loving person, ran my own business and raised three great kids. Now I struggle to cook, clean or go shopping. I do not drive, and I am dependent on my loved ones to take me to the places I once freely took myself to. I have lost my social filter and often say inappropriate things at really inappropriate times or places. I cannot stay in a store where too many things and people are talking and moving about. Too much light, too much sound, too much motion. My heart was turned off. I have little emotion, or feelings of personal connection to people or such. It is a very empty feeling. I truly miss me.

You know, Ive had TBI problems and concerns that I feel that NO ONE understands. Even me. I even had a stroke because of one of the surgeries, its hard to even try to try. But after finding this article. I no longer feel alone. And now, all those 'petty' 'laziness issues' and 'lack of will power' is finally explained by this article. I am very thankful for this post. And wish my fellow SURVIVORS of TBI the best of luck. We've all made it this far….there is no point in giving up!
Loved this article, very helpful reminders to share because some brain injury survivors have trouble communicating but definitely deserve to be heard like everyone else!
I also was discharged from the trauma center and all my papers said was when my next appts. were with the trauma doctors. It'll be 10 years in Feb. and I'd give anything to talk with someone that actually understood the intensity of loss of ME I feel and how frustrating and scary too life is now. Im so tired. So blah. So insecure because of the cognitive losses and almost complete inability to form long term memories. And I rock a lot. It's awful. I've hsd panic attacks for first time and my claustraphobia is worse. I'm alone 90 to 95%!!!! I'm lonely now.
I echo a lot of things already said. I wish so badly the hospital or rehab center had sent me home with information like this. I need to contact them and find out why and tell them that they need to provide TBI patients this kind of information (and a lot more) when they leave the hospital! I went through so many thing like this in the first years after my TBI and had no idea what was happening to me. This is clear and simple. Thank you for the information.
Hi This is James again..the long story below..!! Just a little update and what it is like to live with this condition 10 years later and well into working with it. I have not been able to work at my bench jewelry projects for about three weeks now..I also had to deal with anxiety attacks to the point that even my breathing was affected. Felt inside of myself that I was just going to explode emotionally. I could not get a handle on this condition...I have never felt anxiety before...I of course did not sleep well the past three weeks and got little very much needed work done. I did hide these emotions inside myself and kept the world from knowing.. I did finally get through to my wife about TBI..we had a fight and when I said I had TBI..she laughed and said No way.!! you had a little mental breakdown.. Well I was ready for that statement this time and challenged her since she knew to just go on the internet and compare TBI with a break down and get back to me. She came back to me and had to admit I was correct and was sorry for how she has treated me all these years. She finally gets it about my condition..she did some research and thanks to this site as well as another site and all the information today to pull from all over the internet. She still does not understand what I deal with, but at least is trying..I copied the page here on what NOT to say to a TBI survivor and some other info here. The information since the Afghanistan war bomb survivors and some sports stars have come forward to help educate the public has increased over the years to what we have today. I guess I have been pushing myself to hard again and broke down..I label it a melt down. The mind is so similar to the computer..it also crashes,boot ups,slow response times, Re-boot and so on.. I use the computer to link to..to be able to explain myself and how I work.. Keep your chin up and work beyond the current challenge as I do. Wish there was an easy fix answer..There is not..!! But I hope you have compassionate and understanding friends and family. That has been my greatest challenge. James
While the accident that caused it was never a major one, I have had a number of concussions before which lead to it being worse than what it was. I was absolutely fine shortly after the accident and didnt have any trouble getting back to work (slight car accident on my lunch break). And even getting back to home after work as well being dropped off from a workmate. There was something up that night, I could just feel it, the following morning it was hard enough to say that I was okay yet alone when my flatmate asked if they should make me a cup of coffee as well. Almost breaking into tears at the inability to explain myself to them, my mouth moving around as though eventually words would come out even though eventually nothing. Its one of the most humbling experiences where it felt as though I had to start from scratch. After going to the doctor and having numerous tests and profiles completed it was around 6 months before a part time return to work (after much worry and anxiety on my part as to if I could even do the work any more, when you notice that you cant do simple things at home you doubt whether you can go back to work). To me the best thing was getting back to work and starting to find another way of doing things and make the effort to relate things to each other. Sometimes the most frustrating things are the simplest where it may of taken you 2 seconds to calculate something now takes 20 or 30 seconds *went from the 81st to 72nd percentile in math/abstract reasoning tests before and after the accident* It takes time, stick it out and it will get better. You will get there :)
This is the best info for caregivers, family and friends to understand how TBI from a meningioma resection affects a person! Thank you!
Wow!! This is "me." You have described me in detail. I am a brain tumor survivor and this is my life now. Don't get me wrong. I love my life and I am very happy. I work hard to be healthy and try not to take anything for granted, but whoever wrote this understands "me." This is how it is for people that have survived brain tumors, and brain injuries. Thank you for putting it into words.
My wife of 28 years is a TBI survivor. Her accident was 25 years ago. This article is important. This site is important. Every. Single. Word. of this could not be more true. Even after all this time this is still helpful to us both. I didn't get much of this for the longest time. The information simply wasn't available. If anyone has any doubts about this please ask us. Please ask someone. At least in our case there was no silver bullet drug or treatment. Time. Patience. And hope. My wife Su has written a book that will be published on Feb 4, 2014. She wrote it, and had it published to get the word out. So people don't have to go through this stuff alone and in ignorance of what is happening inside a survivor's head. Inside her family. Inside her life. For my part please all take care. This is some of the hardest stuff you will ever do. But don't lose hope. It is important too. We will both help if we can. "I forgot to remember" Su wrote it not so much to tell her story, but so no one would ever have to feel alone with TBI like she did for all those years. She is the bravest and strongest person and woman I have ever met. And this describes our world to a T. Because survivors really want and need us to know this stuff. And we really need to listen and get it. Thank you for this and everyone's comments. Jim
my god the nhs should hand this out as a leaflet to get friends and family to understand. I'm very much like this 18 months after brain surgery
Hi I just want 2 know how u cope cuz I have head pain lazyness brain don't swich off and I talk bad it feels some time am mad lost balance walking not the sAme guy I was and lost caring for people and loving them and feel emty inside like am alone no family no friend like we not what we were Even pills don't help
Hi, I have been having cognitive problems, and chronic headaches for more than a year. This article completely describes me, it's so difficult for me to find the words when writing or talking (even when before my injury I spoke 6 languages). Now that i know this, I may not feel myself so insecure. My brain is most time empty, I had such a great imagination before the injury, and now it's like I can't make images on my head, just memories. And to this I have to add the chronic headaches. I should study, since that was what I was doing before the injury, but I completely misread everything, or forget it. It's so frustrating. Writing like this it feels like if I'm writing in chinese (which I spoke before the injury), I can't help not to note it. Well, that's all.
I read a lot of the stories here and most seemed to have short term problems and a happy ending...Wish my story was the same...My story is written to help the long term survivors or we that have learned to cope with it. About 7-10 years ago I was robbed and beaten and hit in the head by a couple of thugs. At first I had my confusion but seemed fine except for the traumatic event I had just had. I could still talk and function and drive my car. I went to bed that first night and found I could not sleep..I was only thinking of the incident and the trauma of it and had visions of them outside my window with guns pointing at me and waiting to hear a bullet rip into my brain..I wondered what that would feel like and if I would even hear it..I got no sleep that night..I got up and found myself full of wanting a normal day but could already feel it was not going to be that. I got to the kitchen for coffee and was asked the first question of the day, I had no answer as my mind was blank. My legs went limp and I found myself in the floor crying and could not talk. I had several of these events that first day. I told my friends that I was OK and if I could not talk I would hold up my index finger to signal I was OK..For a 45 Year old man with a 170 IQ and in command of his life and business I was totally lost. My brain was empty and Black inside..My Brain was now empty and all the things I worked on inside my brain were gone. I knew my name and I felt I still had memory of who I was, but would soon find out how limited even that was. Here I was on the floor crying and holding up a finger as the only way I could communicate. After an episode I could at a point in time get up and talk again, but my speech was slurred and my vocabulary was very limited. I cried a lot and could not move my mouth to speak with much of my trying to talk effort. My brain would have a thought and when I spoke the thought..it would come out slurred and jumbled. My first day was hell and I was very scared at what condition I was in. Medically I was OK..I had no outward signs of being attached or any injuries one could see other than a few scrapes and bruises on my arms and hands. No outward head injury showed, many day later I would find myself in the emergency Psyche ward. My friends did not know how to help me..!! My second night I went to bed again was the same..no sleep..all I could do was look out the window and imagine the two attackers pointing a gun at me out in the dark. My next 6 days were all the same.same problems and no sleep. Finally on the 6 -7 night I got one hours sleep.my sleep returned over the next few days an hour a night..My days were spent trying to do things but could not. Many things triggered the legs limp and falling in the floor crying. Most were when asked some thing and I could not find it in my brain I would find myself in the floor crying. I hid from everyone and the very few I went out with was difficult. My speech was slurred and I talked like a Retard, excuse the term but that was what my brain told me I sounded like,and did. My short term memory was a few seconds, not even ten. I could have lunch with friends and the next day not remember them or having lunch with them and did not know their names unless very old friends. My former brain had been everything for me.it was who I was. I was a jewelry manufacturer,designer,silver goldsmith,stone cutter and so on. I now was totally dis-functional and could do very little. I could not sit at even my bench and work..I spent two years in a total black hell of a depression life. I wanted to die and to go to bed at night was hell knowing I was going to wake up tomorrow in the same hell. I did not want to see tomorrow and it scared me and was black and horrible. After the two year point roughly I found I could still cut stones.. but I found it was some thing I could do at my pace. I was computer eliterate at the time and with under an hours coaching and with an old $50.00 computer I started selling on eBay. Was very hard to organize my thoughts and answer emails and many many things got me down and I could not cope with them. I would hit a wall mentally and would shut down and rest. The Dr. had diagnosed me as totally dis-functional. I could not live with that and pushed myself to achieve things. At first I could not remember anything. I put a lot of notes around my house. I had a list next to the door at eye level to tell me to turn off the coffee pot, have my wallet,my house and car keys etc. My first job I got to recover with was delivering pizza..I was broke and had to start some where. My notes next to the door even told me I needed my proper dress, which was a cap,my black belt, my black shoes,pen,flashlight ect. I would forget even those simple things. Was very hard for the first couple of months. My notes even had to tell when leaving the parking lot to turn left or right.. I had a map on the wall and wrote delivery notes to get there. This job forced me to deal with people and my memory. I did find after a couple of months I could find places on the map. Turned out to be the best thing I have ever done for myself to recover. Meanwhile I grew my business and retired to full time eBay after over a year of pizza delivery. Now ten years later....... Today I am 10 years or so beyond the incendent and still have many issues. My memory has gotten better, but I still have short term memory problems. I have many problems I have learned to live with. I am a different person than I was. My personality has to still deal with anger. My family has NO compassion for my condition. My family is very short with me and yells at me and I hear all the time. I already told you that why are you asking me again. I state ..if I knew why would I ask again.?? The hardest thing I have had to deal with are dealing with people next to me that should understand my condition. But because it is an unseen condition they do not see it or even want to. I hear so many things that are hard..Why are you so angry..?? I just told you that.?? Gee did you get up on the wrong side of bed again..?? We have already discussed that.?? Why are you bringing that up again.?? What is wrong with you..?? and many more I have found I have to do every thing in an orderly manner. I can not deal with confusion and disorder. There are many things I still cannot deal with. I still find myself tired and need sleep. I label it hitting a wall, but means I have reached a point and can not deal with it any more and need to get away from it and rest my mind..it is a word I use for a project I am working on or any thing I do in life that is a task and gets difficult. Many things I do are in time limits of when I can do them. Some times I can do now or today and other times I can not do the same task and will sit undone for weeks and then all the sudden I can do them. I have found myself every year getting better and I can accomplish more things or I have just learned how to do them with my limited ability or both. I have had to relearn how to do about everything in my life as I do things different now. I have not recovered my large vocabulary I once had. My brain still thinks thoughts and I have to convert the thoughts to words and I feel the execution of that. My brain works today as if I knew another language and had to convert from it to English to talk. I think the thought and search my brain for the words to speak the thought. My brain gives me still today very limited words to work with. This makes me stutter some as I try to find the correct word. The problem is the words I am given are very limited and do a very poor job expressing what I truthfully am trying to say. My brain does not give me the best words or compassionate words, it give me what it does and very hard to work with the words given. And then I get reprimanded or criticized for using the incorrect word. I get accused of being a #*^$ hole and many other bad comments. My limited vocabulary is hard and direct and is not compassionate, which I am. I am forced to talk with this limited vocabulary to express myself with today . Thank God I have a photographic jewelry memory and have that vocabulary. It seems the words I have the hardest time with or try to find, have feeling connected to them and hard to express feelings.. I still find myself linked to many things in a day I almost cry over and have to hold that emotion in myself. I find many emotions and feelings and thoughts that are a battle to keep inside me and not take over and I cry or other response. I still take many naps. I still need rest. I have a hard time sleeping very long. My night's are spent trying to sleep and I lay there awake. Some nights I get a little sleep and others not. My sleep habits are horrible and I sleep in 3-5 hour increments of time. I know I need to sleep regularly for good health but reality is another thing. My mind is hard to shut down at night to get to sleep. That is the short story and the longer one is much worse and much more to it. I am working on a book to inspire people to get beyond this condition .That there is hope and a life beyond this condition once one learns how to deal with it. PS..today I have built my business to over a million net worth and am one of those internet living at home and in my PJ's entrepreneurs ..not that simple But I have pushed myself to show it can be done and I am not done yet. I have only just began. James
this is really interesting i can relate to huge parts of this, what i am still unsure and friends have pointed out, that i have good days and bad. I never went to hospital with my injury. I am rather confused by it all, and don't know if the issues are just sign of pstd. but know i have been the same since it happened/
Thanks for writing this. I am 26 now but my brain injury occured when i was 10. I had encephalitis and seized (part was in a pool) for 4 hours straight. The encephalitis also caused mesial temporal schlerosis. I was put on meds, but eventually got off of them because i thought my seizures had stopped. When i was 16 i started having them in highschool and i was put back on meds...which didnt work. At 17, i had a right temporal lobectomy. Before the surgery i was really shy and quiet. Now, i have pretty much no filters. Its so embarassing..i feel so different. Other than that, i have short term memory issues and a lot of emotional issues as well. Has anyone had this trouble?
This has given me so much insight into a new found friend's life. Thank you for being straight forward and practical. This will help me be more understanding and aware of his needs.
This article is SO accurate. I wound up in ICU for two weeks and sustained coma, skull fractures and open-head surgery after a crazy freak accident when I was 15. My life dramatically changed and it was a bumpy, long recovery; however, nine years later, here I am after reaching a life-long goal I believed was unlikely to ever happen - I applied to Medical School this summer! It has not been an easy journey. While I still have to work much harder to learn and retain the same amount as my classmates, and I still experience mental fatigue and mild anxiety, my drive to overcome my injury in order to become a physician and inspire others in similar situations has blessed me with a miraculous recovery as well as the determination to succeed. All things are possible. Within 24 hours after my injury, my parents were told that the odds of my survival were not good, and that if I was to survive, I would very likely suffer significant permanent damage due to bruising and swelling of my brain. The statistics and predicted prognoses are disheartening, and I urge anyone who is recovering from a TBI not to let statistics define your own recovery outcome. I sincerely pray that my own story provides a little bit of hope to someone out there who needs it.
My god that is so accurate especially the tiredness
I had a TBI 6 years ago and it took my life away...I can no longer work, drive, read well, concentrate, I'm partially sighted and deaf on my right side along with being tired a lot and rely on my fiancé for so much. But I'm getting on with it...I have days that I hate myself but I also have days where I'm so happy to be here...Brain injury confuses me about everything but after finding this site I'm so happy to know that I'm not the only person in the world that has the same feelings and problems...Thank you everyone, I now feel like I belong...again...looking forward to reading what everyone has to say.
Really appreciate you sharing this article post.Much thanks again.
Thank you. This info is wonderful. I am an 18 year survivor. I have a masters degree, and everyone thinks I'm "fine". You have described me to a T. I have been sending this and the video in part 2 to everyone I know and trust, so they can (maybe) understand!
I don't know if this will be read much or not but here we go. My name is Dwight and I am 10 years removed from my brain-injury. I had it while living in Vail, CO and was snowboarding at the time. It was the helmet that saved my life! Literally. For all those new or those helping others cope, don't give up hope! While I'll never be as on-cue as I once was, God has allowed me to be so far from what I was. After about the 3-5 year mark, improvements become very, very minimal. BUT they do occur, which I am still healing to this day. My biggest deficits are short-term memory, impatience, irritability, and I get tired very easily. Don't give up hope everyone, there is life after a TBI. It depends on your attitude toward things and that will help determine your prognosis. (by God's mercy and grace to marry a physician who knew me pre-TBI) If you are reading, thank you, I do hope others may find hope in this.
HiI am new to this site.my husband had a really bad brain bleed nearly 6 years ago.he still can't talk is still peg fed right side paralysed no understanding.i think I have come to the end of what I can do to help him now.can anyone suggest anything.
My husband is 8 weeks post-accident, suffered a TBI, and I shared this article with family members. Still so new to this, but want as much information as I can find to help him in his recovery. I have my own anxieties; what will happen to our marriage, what about our future, money, family, thank you for reminding me that as bad as it is for ME, I have to be there for HIM. I will try to stay patient, though I have to be honest and say that I want my \"real\" husband back! I would suggest to all TBI patients & their families that counseling helps so much, doesn\'t make problems magically go away, but it does give you skills to deal with them. Thank you for this information, and good luck to all of you.
It is so refreshing to finally figure out why I am the way I am 10 years after having my cancerous brain tumor removed. I am medically in good health but because I look "normal" I wasn't treated for TBI. After struggling with this for all these years, a marriage counselor discovered my problem!! It's so good to hear other people feel the same as I do. I look perfectly fine, no physical disabilities. I guess that's a problem for the medical field. As days go by I become more frustrated with the "major teaching hospital" the did do their job in treating me medically, but not mentally. I am thankful that they saved my life! But if I had come into the hospital trauma unit with a head injury I would've gone thru cognitive and speech rehab. While I sometimes think "what might have been?" if I had rehab 10 yrs ago, I must forget that and move forward. I'm working with my insurance company to get the rehab I really need. My poor family has had to deal with me all this time while thinking I was this horrible person. I really did not have control over my emotions, communication issues, fatigue.... (My tumor was on the right side of my frontal lobe.) I truly did not understand any of my actions myself until my husband & I ended up in marriage counseling. I am thankful for finding sites like this one!!
Reading this brought me to tears................ Thanks for such words, I loved how you were able to explain an deliberate exactly how I feel on a regular basis. I have to bookmark this for future reference
I was the first case in NC at Duke diagnosed with Anti NMDA receptor encephalitis. My tumor wasnt found for over a year and treatment was experimental, prolonged and incompleted...I have only one person who truly stood by me and gave me all the patience and love i needed....my mother. No one understands and those you provide the information to help them comprehend only take certain facts and apply their ignorance.It takes patience and understanding. My brain is still healing 4 yrs later. If you suffer from a TBI , you are a walking miracle. That is what people should understand...what it is to live with everday
My daughter suffered a TBI in 2002 as the result of a car accident. What this article says is so accurate - took me right back to those days. By some miracle, she recovered completely (with a few very minor personality changes) - we are both now volunteers for a support group which offers help to people who have suffered a TBI and their families. I'm in South Africa.
I am a single mother. As a result of a home invasion, my son received multiple injuries, one of which was in the parietal/occipital region of the brain. He is 23 yrs. old, the incident took place the latter part of last year. He was hospitalized for months. He has been in therapy for months. He is truly not the same. He has stammering words, processing information issues, prolonged preparation, lack of motivation, sleepy a lot. Although in his mind he is saying :cup for water, he may say "p, p,p, then what is it again". So then he gets a verbal prompt such as c, c sound, then he gets it.HE has right side weakness on the entire right side from his right foot all the way up, including the right side of both his left and right eye. At times it is difficult, but I guess I am just feeling so blessed, because the medical professionals didn't expect him to even make it. I am so blessed to have my son. But it is constant work and wondering. Please keep us in your prayers. I am currently seeking all the help I can for him that he be back to normal as possible, its not easy.

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