
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.
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 (750)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
I love ur post, and know u r blessed
Anonymous replied on Permalink
18 years now for me and still struggling with people who misunderstand
Anonymous replied on Permalink
My TBI was 8 yrs ago - run over by a drunk driver at the airport.
Your comments have made me feel like I am not alone. I will never meet you nor speak to you but you have probably saved me.
I lost me - I know I lost me and I want ME back! Before the accident, picture your stereotypical sorority girl - but nice :-) - doing volunteer work at the orphanage, working full time, organizing campus wide fund raiser, and more and still pulling down a 3.8 in college (engineering). I was everyone's friend because I LOVED people. I loved being around them, I loved talking to strangers and hearing their life stories and learning lessons to use in my own. I hugged everyone! You either loved me or hated me because I was that annoying perky happy person but at least I tempered it with a very sarcastic sense of humor.
Fast forward to marriage and kids. Still worked 60 - 70 hours a week (global team so all hours of the night and day), was homeroom mom for two kids, GS leader for two troops, GS Council, basketball team mom, soccer team mom, and more all at the time of the accident. And then, because some drunk decided to drive - in reverse - and drag me 18 ft, it was all over.
For six months, I couldn't sleep in any position but sitting up in a recliner due to the various injuries. But more importantly, I couldn't stand for anyone to touch me, even my kids. At first, I thought it was from the pain (broken ribs) but it got worse. I couldn't remember anything and I just wanted everyone to go away and leave me alone.
I was diagnosed finally and took all the tests. My short term memory is really bad. I have lost entire chunks of my life - I don't remember my children's first steps or first words. They will say "remember when we.... " and I have to just smile because I haven't a clue what they are talking about.
And people... oh, I don't like people in person. I can still talk to you on the internet and thank God that I am "home office" so that I can continue to work, otherwise, I would be on disability. I can handle being around friends for maybe an hour and then I have to walk away for a while. I can't go to Target or a football game unless it is a good day. I deal better "in crowds" than I do say Parent Sports team meetings because I have to deal one on one and they still want me to organize everything or be perky and I JUST CAN'T DO IT.
My husband was supportive for the first several years but now thinks I am faking it. The latest round of medication for my migraines and other drugs has helped me to gain 40 lbs. The shots for my permanently damaged knee have basically stopped working and I can't sleep or get comfortable from the pain.
He has started to call me stupid and make comments like "you really are brain damaged, aren't you?" in a vicious manner. I can never do enough to make people happy and I can't be who I was and want to be again. He says I am a fat, disgusting crazy idiot. Happy 25th anniversary honey - you should be committed!
We/I bought a farm last year - 30 acres in the middle of nowhere - 12 hrs from our main house. It was "his idea" although now he resents if I go there but all I want to do is just run away. Stay at my farm and not see people. Live without stress, but I can't because of my children.
I AM NOT STUPID! I AM NOT CRAZY! AND I WANT ME BACK!
And if I can't have the old me, then I want to be left alone so that can find peace with the "new me" because apparently, we are going to be stuck with each other for the rest of our lives...
ps... sorry I ranted but I feel so alone...
Anonymous replied on Permalink
This sums things up so well, I just really wish I could get others around me to understand also.
Anonymous replied on Permalink
Wow, I just stared directly into the mirror it seems for the first time in 12 years almost to the day. You hit the nail on head. OMG, I cannot UNread this to avoid the reality of it, it's just so overwhelming. How can I say I've made it this far? I simply can't run away from myself, so, so far, I guess my future will present itself. It just depends on "where I stand in governments hands" for where it is I will wind up. Got "in line" for housing years ago... "my future is in general population line up."
Anonymous replied on Permalink
There is hope for those of you with mild to moderate brain injuries. New science has emerged on the ability to use quantitative EEG technologies to pinpoint the areas of dysfunction in the brain, and to retrain them using Neurofeedback - see article for more information:
http://www.internationalbrain.org/articles/neurofeedback-treatment-for-traumatic-brain-injury/
Don't give up, and don't lose hope. Continue to seek help to fully recover!
Anonymous replied on Permalink
I accidentally come across this site and couldn't belieave how right on this site is. I am the mom of a 16 year old daughter who has a tbi. She had a horse back riding accident 3 years ago and is really struggling. She is on meds for depression, and anxiety of all kinds. It seems like we are taking her to the doctor all the time, always says she is sick and most of the time they do find something wrong with her mostly this year sinus infections. Anyways this isn't easy alot of people don't understand brain injuries. She is the first one they have seen that was this bad. Oh, at first they did everything they could for her academically from getting her a tutor to just about anything, well now it's been 3 years and they think she has healed. She is on an I.E.P. , if she misses so many school days in a quarter they make her type reports, that's all she needs more more to do when she can't hardly finish her home work. Even her many doctor appointments count againt her. My husband and i have gone to meeting upon meetings trying to talk them into puting it into her I.E.P. that because of her disability and needing these doctors appointments it shouldn't count against her, well they cut the reports in half but it's still a struggle and they will not do as we ask. Acouple of years ago my daughter had a break down at the school and she ended up in a childrens mental hospital for 2 weeks. I do realize i don't push her enough worried she will fall apart again but i am not sure how much i can push her without this happening. She can go to school for so many days then she says she is sick or her head hurts so i call the school and try to explain but they don't get it. Sometimes i don't get it! The doctor at the Psychiatric hospital told my husband and I that the child that got hurt that day is never going to be the same, like that person died and now she is trying to find the new person.
Thank you for listening.....
Anonymous replied on Permalink
Another one is that if the survivor is a person of faith, his or her recognition that he or she will not be the same again is not a lack of faith but acceptance.
Anonymous replied on Permalink
Just like so many others have said, this is spot on for TBI survivors. I am 13.5 years out and still trying too hard and making myself ill. So it's a great reminder to myself that although I have always just wanted my life back it is not as simple as that. Thank you for this fabulous article.
Anonymous replied on Permalink
I am everything this article talks about...but yet it seems no one understands and then I feel alone in this trauma and confused???
Anonymous replied on Permalink
This is a wonderful piece of information to pass along to family and friends. I suffered a traumatic brain injury in 2003 as a result of an automobile accident. The accident was catastrophic and I was in a coma for 6 days. 11 years later I am doing well but suffer everyday living with a brain injury. What was mentioned in this article I experience most of the time. Trying to explain it to people who don't get it is very hard. Thank heavens for websites like this. Your are a blessing.
Anonymous replied on Permalink
Are there any video suggestions that I could show at my support group around this topic ?
Anonymous replied on Permalink
All I can ask is, "Will I ever be the same?" The guilt, the shame and as the source of constant disappointment to everyone who knows--or knew--me is relentless, Three years already, and it's still just shadows, cinders of a person I once used to know. God, I am so tired...
Anonymous replied on Permalink
My son was severely injured in Iraq and lost both legs above the knee by IED blast. We had a local doctor donate 80 hyperbaric treatments to heal his brain and it worked! He takes no medications at all and we literally got our son back!
Anonymous replied on Permalink
What a windfall to find this forum.
I experienced a subdural hemmorage in my right frontal lobe 6 years ago. I underwent brain surgery where they evacuated the bleed and clipped the blood vessel. I have had seizure disorder since then. I underwent several life changing events within this period of my life, in the following order; pre-surgery, father died, lost me CEO job and I contracted bacterial endo-carditis. I had an aortic heart valve replacement then the brain anuerysm surgery 2 weeks later. My 1st valve operation failed 4 months post-brain surgery. My wife met another man and filed for divorce, serving me papers the Friday before the Monday surgery. I went through 3 years of talk therapy and my divorce property preceedings took 3 years to finish. I spent $200k of my retirement savings to pay legal and medical bills. I am writing this down to explain my dilemna with my brain functioning, since the brain surgery.
I cannot express these negative emotions of deep sadness with crying. I find they are bottled up inside and none of the therapy I received changed this ability to relieve the pain of the extended trauma, 6 years later. I do have joint custody of my two young boys(7&9) and received most of my pre-marriage assets back. There is a silver-lining to this TBI and that is that this condition of "muted" emotions saved me from suicide and homicide immediately after release from the rehab. I do harbor hatred yoward my ex and many people who don't understand TBI, say "forgive and forget", a decision my brain won't allow me to do. After my discharge from rehab, I had my boys and I met a new love partner(my current wife). The downside of this brain injury was that I was disabled (judged so by neuropsychologists for cognitive function) and could not find work in my field. Being in a small industry, the word of my heart and brain surgery spread quickly and some people thought I had actually died. The ones who knew I had survived were skeptical of my remaining faculties. I was stygmatized due to my health problems, long past. I won't feel completely healed until these negative emotions and release of sadness occurs.
During my time on disability, I started my own company and was prospecting for financing, which has not happened, as yet. Due to financial needs, I have been applying for work in industry that is related to my previous industry. I will decide on the future of the company if/when i get a job offer that I want to accept. I have two opportunities currently presenting themselves that may land me a well paid job in the next month without being required to relocate away from my children.
I don't believe I am limited in my cognitive abilities, as evidenced by my development of this new company. I do get mentallly tired easier, but do not haveoutward symptoms described in the various forums or medical websites I have visited.
Anonymous replied on Permalink
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
Anonymous replied on Permalink
Does anyone have information on the long term effects and PROS and CONS of using PEEK Cranial Implants?
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
Amen to this...... This is exactly how I feel.
Anonymous replied on Permalink
7 months ago I fell. TBI diagnosed with ADHD also discovered. I am not, nor expect myself ever, going to be the same.
Anonymous replied on Permalink
I want to print this and give it to family & friends...my symptoms are NOT my imagination....wishing everyone understood is....
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
Thank you, from all of us with Chiari Malformation and Intracranial Hypertension.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
I am not Faking it!!!!
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
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.
Anonymous replied on Permalink
I am a 31 year survivor of severe TBI, thank you~
Anonymous replied on Permalink
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
Anonymous replied on Permalink
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!
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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.
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