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

Barbara J. Webster, Lash & Associates
Barbara J. Webster headshot

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. Reviewed July 25, 2018.

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 (774)

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.

Hi i have injury from when i was 4or 5 im 35 i don't know much about my frontal lobe injury but i sure can feel my thinking stops and cant get passed it.what i just read was allmost bang on. One sec lost thought........ Enyway i forget what else i was going to put😞

I suffered TBI 10 yrs ago. I was already disabled from fibromyalgia, chronic fatigue, some immune system issues and had a crazy fall. The impact was so hard, I bounced around like a pinball. Although I don't remember it, I had injuries on several parts of head and broke my neck. I have post spinal fusion failure, lost most sense of taste &smell, it triggered narcolepsy (that's a WHOLE OTHER issue),global cranial ischemia, post spinal fusion failure, bulging, protruding & degenerating discs, arthritis, and lots of inflammation in my spine. Also I suffer from depression, anxiety, aphasia, I am in so much pain I spend close to 90% of my life in bed. It hurts SOOO badly just to hold my head up, I end up crying hysterically in bed for hours. I have these 'spells' when I am up and about where my head will get sharp pain and I lose my hearing and vision and cannot hold my head up and I have to just lay down on the floor - no matter where I am. I have had a HORRIBLE migraine headache (which I never had before the TBI ) for almost 6 months straight now EVERY SINGLE DAY. I HAVE NOT HAD A SECOND WITHOUT PAIN SINCE I REGAINED CONSCIOUSNESS THE DAY OF THE TBI. I am not old, but I no longer have a social life and I used to travel the world and had an extremely exciting and successful career. Now. I don't I don't understand HOW my WONDERFUL fiancé still puts up with me !!!! Bless his beautiful heart! My mom has to take care of me like she did when I was a child, because I can't even fix my own meals most of the time nor can I get myself to the doctor. Stumbling upon this website, after just discovering I've got global ischemia is like a message from God. I feel so so alone. Although they try, no one understands what this is like.

I just hope to be me again.

I've had 8 brain surgeries from a ruptured aneurysm and I can say very one of these is true!!

I am a 12 year survivor, at least 2 to 3 years after 90% of this article was true. Now the only problem I have is headaches, but no limitations.. We are all different in how severe our anuerysm was, and how our bodies and mind were affected. I am now doing well, but the first few years were very difficult and a constant struggle. It will get better, have patience  with yourself, and keep moving forward. You survived for a Reason....

Hello again: I have lived with mine for 'going on 38yrs', and in 1977 it was basically UNHEARD OF to survive what I went through, or so I am told. I made the best of a 32day coma after a head-on collission and have made a few observations along the way about how to deal with one of these. DO NOT GET TOO HOT FOR TOO LONG, that is not good. A wet rag on back of the neck works well in keeping you cool

Thankyou for this list! could I add one.

Please try to have my back and support me when my limitations are embarrassing. DON'T LET ME WALK AROUND ALL DAY WITH MY FLY UNDONE. When I have a blank look at the person who has just walked up to me please use their name in a sentence, in case I can't recall it. If you see me struggling to carry a plate of food through a crowded room I probably would appreciate an offer of assistance.When you set up a buffet table leave spaces whereI can set down my plate while I fill it. It is often difficult to carry a plate with one hand while filling it with the other.

I'm a TBI survivor of 4 years and I'm 25 years old and i wanted to tell parents out there with a child with a brain injury is give them space and listen to how there feeling. I know its hard to understand what there going through, they have to learn how to live again and its hard. My biggest advise would be is knowing when to push and moviate and when to back off and just let them be and have space to breathe.  

My Son suffers with all these things daily! People have no idea unless they've experienced it 1st hand. We continue to encourage and support him! He truly is our Hero!

I have never read something so true, I can relate to most of them.

I hit my head/snapped neck with force then snapped neck again a short time later. Migraines started, then memory loss, then no capacity for stress and ?depression? (didn't seem like depression). Lost recall of the TBIan it wasn't until the head injury was identified two+ years in, that any tests were done. MRI showed some brain damage. The medical community needs to run these tests immediately rather than prescribing meds and sending people on their way.

I had a TBI 5 months ago and am a survivor.  After reading this, I had tears in my eyes because I keep trying the best I can and people don't understand. I am 17 and recovering. It is long and hard. I want to be who I used to be. I am such a different person now.  it is so difficult to accept this. I try to forget about my injury but I am reminded everyday of it. How do you get through this and be the person you want to be? I love this and am glad that survivors are sharing their stories because I now know I am not alone in this difficult journey of recovery!

I broke my Head in 2012 and got a TBI. Almost 6 months later I was tired of being tired and had to try a go back to work. So I did and things went ok for a few months, then I fell off a ladder and had 2 more surgeries. Now this day/today I still push myself and have just realized I am only setting myself back. I still need to heal. If you are like me you are not the type whom likes doctors, boredom, or feeling lazy, so you try and push forward way to hard... well don't, because you are only going to en up hurting yourself in other ways.

                                                                   JLB    2014

This article is great!  I suffered a closed head injury about 30 years ago.  I have no memory of my accident or 6 months before or 6 months afterward.  But I can relate with every thing in this article.  There is so much still, to be learned about the amazing brain.  I look forward to reading more of this in the future.

This is awesome. Like someone in the chat mentioned, this should be a discharge requirement that comes with all TBI patients. All of you can probably understand what it feels like to not be understood, especially by family. Someone not understanding these things, especially while you are recovering, keeps you from understanding yourself. Thank you for your post.

For the commenter below:  I had a TBI two years ago.  I lost my sense of smell, and it has not returned.  My doctor told me that it if wasn't back after six months, the odds are strong that it would never return.  Loss of smell is common with TBIs.

My guess is that, if you are like me, you can still taste things but the sense is much weakened.  That's because the sense of smell heavily influences what we taste.  Without smell, I can still taste a few stronger things (like spices and mint) but most things have no flavor.  Food enjoyment is mostly about texture.

I just have to say thank you for this. It took me a year to realize something was wrong with me (after two car accidents within two weeks of each other)...getting fired for the first time and plummeting from a 4.0 in my Master degree to failing didn't seem to do it. Once I did the real struggle started...trying to pinpoint what is going on with me and my challenges. I research when I can't explain to others my challenges. I am so glad I found this, as I will share with family. Aside from me struggling to figure out what was wrong the next challenges was abc continues to be friends and family...because I "look fine and seem fine" in simple conversations. What I say to that person is that someone with my former career, continuing education as a future doctoral student and financial security doesn't just decide one day to throw it all away for no reason. To file bankruptcy. To lose my home in foreclosure. To lose my Master's degree (I had one class left) and my acceptance into a doctoral program. This hopefully will help family understand further. Thank you so much.

Eight years and a few months ago I had my skull screwed back together after the removal of a GBM. They got it all and it hasn't recurred, bucking all the odds and making me a medical miracle. That's great, but the combination of standard of care leaves patients with a new and different existence. Behavioral modification and cognitive impairment are expected from any brain surgery, and most TBIs. I can only surmise that my improved functioning is a product of my continuous stimulating of my endocannabinoid system, and also includes neuro protective and neuro genetic qualities. I'm still doing the PA at high school basketball games, memorizing names as I call the action. That miraculous plant has been falsely demonized our entire lives and recognizing when you're wrong is a difficult task, but cannabis and humans have a bond that is unmistakable if you're willing to look into it with an open mind.

I am totally there with all of the above issues,and working on all of them..I am also experiencing others wanting and thinking I can recover faster. Even my close family and friends.My family physician even states I can get better faster :(

My nephew had a TBI in 2002. he lost his sense of smell and taste. Taste returned in the first year.Sadly, he still has no sense of smell.It's just one example but you asked...pray that you have a better outcome.

This is so very true♡ my dad is a survivor and every bit of this describes him. Thank you so much for Sharing♡

Hi to all. Just wanna know if anybody in this forum who had TBI and lost their sense of smell and sense of taste??? Did you get them back? What treatment did you get? Please let me know. I had TBI 6 months ago and I'm still waiting for my senses to get back. My doctors don't have any clue and don't offer any hope.

I suffered a ischemic stroke to the right frontal lobe.  I was in denial that there was anything wrong when it happened, other than being in a state of confusion for almost 4 days before going to the hospital.  Everyone said it was stress.  The hospital said it was a brain tumor and sent me on my way.  I am a year and 3 months out and just started working again.  I am not sure how it will work out as the only job I could find is in a warehouse and they expect me to meet the standard for someone who has all their brain working.  I still have periods of confusion and have to stop and figure out where I am which impacts my ability to perform.  I also find crowds to be annoying and my temper is very short.  I am not able to keep friends and find my attitude has taken on a " who cares" sort of perspective.  My husband does not understand what has happened and believes there is demon inside of me.  It is very frustrating and feel very alone when part of your brain ceases to work.  The only positive in my life is my horse who loves me just the way I am.

I love ur post, and know u r blessed

18 years now for me and still struggling with people who misunderstand

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.


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...

This sums things up so well, I just really wish I could get others around me to understand also.

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."

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:


Don't give up, and don't lose hope.  Continue to seek help to fully recover!

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.....

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.

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.

I am everything this article talks about...but yet it seems no one understands and then I feel alone in this trauma and confused???

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.

Are there any video suggestions that I could show at my support group around this topic ?

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...

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!

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.

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!!!!