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 (811)

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.

In 1978 at the age of 22, I suffered a subarachnoid hemorrhage after a motor vehicle accident. Released from the hospital a month later, I continued to have issues verbalizing. I just couldn't get the words out in order or to pronounce them correctly.

In an attempt at my own brand of therapy, I played Steely Dan's recording of "Kid Charlemagne"; going over the line, 'everyone stopped to stare at your technicolor motor home', for hours each day. Two weeks later, I could finally repeat it (in order, with correct pronunciations!) , crying with joy.

I still have issues with depth perception, (going downstairs can be a challenge), and will start leaning like the Tower of Pisa when I'm tired.
But there was also a strange perk from this injury; incredible recall memory for places, dates, times, conversations, including the emotions I felt.
It's almost like watching a film of these events when they pop up.

Are they 'real' or just conjured from episodic memories? I really don't know.
But others who also recall them, are surprised with the detail I can remember.

Has anyone else experienced this?

One exceptional life
Oh my goodness God’s grace is so good
Never give up
Every thought captive

Everything to Jesus
Xtra special
Cast your cares
Every thought captive
Pray and praise
Trust and obey
Increasingly loved
Only way
No other way
Look at what God’s doing

Love ya
I’m not gonna give up
Focus on Jesus

I have had 6 head injuries. One at a year and a half. One at 7. One at 8. 2 at 13. And one at 14. The last 3 happened in one year. The 2 at 13 could be considered a double impact in my mind. I lost consciousness in the last 5. After the 5th I found it too hard to think. It was painful. So I started guessing in school. I also had a change in my handwriting. The 6th I sustained a concussion a neck injury and a back injury. There were symptoms that lasted up to 3 years. But after 53 years later what bothers me the most is that I did not get immediate attention. And that I did not get any treatment for the neck and back injury. The neck and back injury compounded the brain injury. The lack of sleep. The constant pain. To this day I still have neck and back pain. So when looking at TBI also look else where to other injuries.

at 49 I suffered a tbi as a result of a heart attack my heart stopped beating for about 25 minutes. the damage was global. I lost all memory of everything including family friends and everything else. I could not read or write feed myself dress. I lost everything. But what hurt more than anything was the change in how friends family and even my wife. Friends became distant and eventually disappeared my wife became a caregiver and angry from time to time. But stayed with me an still keeps me out of trouble lol. I found that music, like singing in a chorus of playing and instrument help with memory, cognitive thinking and an overall feeling of well being. Old friends are gone by new ones have taken their place.

I'd SO Love to complete tasks in a Sequential Order--1,2,3,4. NOT 1,3 2, 4!!!

My sibling had an accident and is suffering from TBI. Before and during their ER visit on the day of the accident they kept on asking for me and kept on calling my name. We have other siblings who were there but they did not recognize anyone but kept calling for me. I wasn't there. I was wondering why that was the case? I am praying for their speedy recovery.

We too will pray for you. I had TBI at age 4, my wife had TBI at 8. Keeping faith is the best medicine. God loves you and He is the divine healer. Never give up my friend. God bless you and yours.

Can you provide helpful information on helping someone with a TBI and in non verbal and non motor. Thank you Jacqui

Excellent article! Thank you!

at the age of 11 in 1983 I took a 9 iron golf club to my left hemisphere shattering my skull into 15 pieces and destroyed my left temporal lobe and amygdala on my last visit with the doctor that saved me he said was going to have a interesting life and handed mother a copy if nejm which I was in

My best friend Michael had two thirds of his front left lobe removed and after 20 yrs later he finally was released from The doctors to live on his own and went back to his home m. He lives on hos own has a lawn bussiness and does 60 lawns a week .. he’s appearing normal again but I moved in w him as his Roomate and I’ve been in love w him since I was 16 yrs old now 50 yrs old .. I’m afraid to go up and kid him as I feel he loves me .. I’ve got two jobs and so he does most of the cooking and he makes me breakfast and he treats me like he loves me and helps me .. 20 yrs later he’s never even kissed a woman how do I win his heart and get him to trust me to let me love him ? Valentine’s Day is coming and I love him w all my heart I want so badly to know how to get him to feel love again

Anything possible with TBI. But in my experience it's like my spirit and heart disconnected from my mind. His love may still be there. Be subtle and or extra flirty maybe to get through. And hope it's the right day or time and try not to add a confusing new complication....His love might be waiting for you to set it free....listen to your heart, but don't get your hopes set to high.

It is possible that the injury took away his ability to function as a lover. Can you discuss this with him without losing your current relationship? Or ask if you can talk with his doctor and ask the doctor.
I am not a doctor so consider this friendly suggestion.

Put on the Little Mermaid and when they sing “Kiss the girl” reach over and snuggle in … and ask if he would like to
“Kiss the girl” ??? Then, let “nature” take it’s course!
Many years ago my father advised me,…”It takes stout heart ❤️, to WIN faire hand”…in other words,
Be brave!

I had a car accident that left me with a TBI.
I had been married 20 years but, after a TBI my husband abandoned me. After living with his rejection for 8 years I asked for help at a local abuse center. They helped me by showing me what I had as income and health insurance. I needed help finding a place to live after my divorce. They found an appt. for me. I have been thru what seams to be hell (punishment for divorcing my marriage of 20 years) up to now. This year will be 21 years later from my car accident.
I met guys that wanted to be friends with me. 1 man charmed me by telling me he could help me recover. My memory was really bad and for 6 years our friendship grew.
It was March 2020 he texted me "Your memory is so bad I can't help you any more. I am moving on." I haven't seen or heard from him since that text message leaving me with feeling very hurt and abandoned again.
My daughter helped me realize I have been thru rough moments since having a TBI. It was my lack of confidence that was over whelming me. She said start healing by celebrating the small moments. I have been like a child growing up. Learning how to cope thru difficult times. Those words helped me to be more confident. It feels like I'm stronger. My Grandmother told me I'm strong as she watched me take care of my young children fighting to sit on my lap. I calmly told them that one of them could sit with me and then the next one could sit with me. They stopped fight for my attention. Yes! Grandma thought I was so strong meant so much to me. To this day I feel confident in myself. My dear friend gave me the nickname Lyla knowing it meant I was strong.

I'm a TBI Survivor after my motorcycle tether balled me into the pavement on the back left side of my skull! My helmet saved me some damage however, I suffered a Diffuse Axonal Injury and since have NO short term memory... My daughter was 8 and now, just turned 21. I've miss a lot since 2008 but I'm STILL ALIVE, & that's enough for me! Stay Strong TBI Warriors!

I am a survivor of child abuse and domestic violence and now have CTE-id be lost without brainline.org....nobody told me what to do...I had to learn on my own. If it weren't for the fact it's too hard for me to keep a job now, I could probably teach a class on brain injury, most of the helpful knowledge came from brainline.org, thank you ❤️,
Caroline Fox

I know what you mean having to be your own advocate and learn on your own. Same here! All of the Doctors and very limited knowledge they have on brain injury or care.

Hello. I am so glad I found this site. I was searching for guidance to help me cope with with my husband. I need to be a better carer in order to save my own sanity. I am not a trained psychiatric nurse, instead I just learned on-the-job. My husband has TBI after after he survived a massive stroke almost 20 years ago. He was 38. He was in an induced coma for 8 weeks, then had heart surgery, after which 9 months of rehab followed. He is partially paralysed on his left side, drags his right leg and has zero use of his right arm. He has made a remarkable adjustment to his life, helping me raise our only son who was 4 at the time of his stroke. It's not been easy for me since I now had two children to care for, a full-time job, and no assistance whatsoever. I'm now 67 and the toll of "dealing" with someone with TBI is showing. However, I WANT to better understand what's going on in his brain, do that I can make both our lives easier. The comments here gas helped me immensely. I understand now why my husband needs a routine, why he is fixated with repetitive habits, why he forgets, then asks me something I've already explained. Thank you to all the TBI people who've shared thoughts. You are living heroes! As one writer put it: "if you think it's hard on you, think how hard it is on us!". Thank you once more I'll try to do better.

Had a moose run in front of our car and gave me a TBI in 2017. Was out of it for a month, kept in hospital care for 3 and 1/2 months and was slowly able to walk again. I have lost half my vision, have various memory issues, some various body pain and such.
Life does change, many things about mine did, and I’m still trying to get used to how things are now, even basic things. I liked the encouragement that this article gives though, that though we may be broken, and need more help to do basic things, that we forget things more often, we are still here :) That we could have gone to be with God but we were able to stay with those that love us is a good thing.
Thank you for your article :)

Dear Jess,
I suffered a serious TBI on march 1 2022. What made me reply to your comments were "gone to be with God". At times I wish I had but as the days pass I know God has work for me here. My recovery has been remarkable even miraculous to some. I'm not the same guy I was but I'm back working, driving and riding my bicycle.

I have a kind girlfriend but she doesn't want to marry and I guess that's ok, I just want to stay in love. My adult kids have rejected me, and my ex doesn't understand me , I have a young son (12 yo) that was scared when this happened but he is doing better. He use to live with me, but is back with mom and that's okay.

I attend a brain injury group and have sit downs with my pastors that help with my thoughts of being with the Lord and moving on. I hope this note encourages you, you encouraged me!.

I have pain / numbness in my right leg, my head is numb and I lost my sense of smell. I live alone and its lonely at times but I'm getting better.

My family (brothers and sisters) stay in touch by phone regularly, that helps. I'm in a men's bible study as well, those guys are great!

Thanks again! Keep up the good work! see you when I see God!

Peter Hyde, San Antonio Texas.

I have an acquired brain injury...an anaplastic grade 3 oligodendroglioma.Right temporal lobe.This articles descriptions are amazing! Thank you so much for writing it! The more folks that read it the better the understanding of it for others.Practically the entire article applies to me....nice to see it out there in print rather than trying to explain over and over what applies to me and knowing I haven’t or can’t help you understand what I’m feeling. Thank you so much for sharing it Barbara!

Remember, some of us have no room for niceties. Impolite, abusive, emotional or psychological games and attacks will make us lash out. Some of us will not take it anymore.

Not all typical support systems are actually support. Anyone can say "they will help" or they are "family", but behind closed doors they are the cause of our anxiety and depression.

- Adult A.D.E.M Patient -

I am in agreement. It is a tough road to walk and even tougher to manage
I try to under stand there issues as well as mine own
But it's tough when they swear to be right and your all ways wrong

My precious wife had a TBI 3 years ago, I am so thankful for the article, I have re read it many many times. I still plow ahead sometimes forgetting that I just ran over her. And now it’s not the brain injury that causes her upheaval it’s me.
I need more TBI victims to share what we can do, and other loved ones who can give me hints, suggestions help to not be part of the problem!! This is a hard walk for both of us

If relevant, help her realize the ways she has changed. Her mentality might be the same. She wants to be and thinks she is the same... It's hard to realize how much change and effect a tbi causes and in my case it was a long struggle and alot of screw ups before I realized I was starting over anew many years later.. You just have to care I guess and deal with the I'm guessing uncontralable emotional outbreaks of all kinds. Slow, steady, subtle, patient, and understanding...and watch out for alcohol or substance abuse (self medicating or destructing) Hope this helps someone.

Can we use the word survivors instead of victims? Hugs and apologies work well... especially when you mean it.

Such a caring compassionate soul you are . I hope your wife realizes how lucky she is. My husband did not take the time to learn anything about brain injuries after mine, sadly. After I recovered ( never the same but highly functional again ) he wanted me back. Of course I could not trust him after he abandoned me when I needed him most . All the best to you and your wife

Keep in mind that few of us really know how to act at a time like this, neither the uninjured spouse nor the injured spouse. Your reactions may have been just as upsetting to your spouse. Try talking with him about this, not from the standpoint of the righteous injured person who feels abandoned but from the loving injured spouse concerned about how the other is feeling and find out what he needs. Give him the chance to adjust to your new life together and get accustomed to talking with you again. Without realizing it, your new attitudes may have been the problem. You both need to adjust to your new life and to a new way of loving.


A concussion robs a part of you. Something that can never be gotten back. You feel like a different person. Everyone says you look fine, but they truly don't realize the struggles. Sound, chatter, speaking with someone,reading, sitting on a bus, being in a crowd, mental fatigue, doing simple tasks, all these literally take all the energy out of you. That energy you USED to have is no longer, it's GONE. Waking up is a struggle, making food is a struggle. This is what people without a brain injury will never understand. They just look at you, see what you look on the outside and say "wow you look way better than before", "you look really good today, it's good to see you're doing well" . All this is simply just another way of saying they don't understand. They're not educated about it, and have never had a concussion themselves. Every day is so different with a concussion. It's not understood until you have one. At that point you understand others that have had it.

So to everyone who reads this, who DOESN'T have a concussion, RESPECT AND DON'T COMPARE anyone who does have a concussion. Don't ever say "You look really good, you must be doing better" , "You should be better by now", "I hit my head too and I am ok!" , "I know exactly what you feel like", "I have some suggestions for you".

The inner struggles of a concussion are NEVER seen. Every concussion experience is different for each person.

So true. We can’t expect them to understand. This is bad and it lasts too long for them to tolerate. They have to go on with their lives and we need to do the thing that make us happy now. We are never going to be the person they knew before the tbi

Hi ,I understand everything you are saying ,but as a wife looking after a severe head trauma husband ,I too am struggling so much as I’m not trained to deal with this ,as you say you look okay ,but I actually know my husband isn’t ok and it’s breaking me not knowing how to help him in the right way ,it’s only 14 weeks and I spend my time crying as we argue because I’m not dealing with everything in the right way ,I appreciate all your comments and any help will help me help my husband ,we have been together 37 years and I love him so much but I need help too

Caroline: Fourteen weeks is no time at all. I know you want to help RIGHT NOW, to get things back to 'normal' or at least on the road to recovery.
But be patient.

It takes about two years for recovery from a brain injury to slow down. (I'm not putting that well. Ask someone in the medical profession who is well versed in brain injury - who may be hard to find.) After that approximate time period, improvement usually slows. Slows, but does not stop.

Right now, your husband is still finding out what he can still do, and what he has been robbed off. (Robbed of, at least for the time being.) And that is likely to be causing a huge amount of frustration. (He is not angry at you personally - even though it may sound like it - the frustration and anger is more about what he cannot do.) And he is likely not used to becoming so fatigued after (what seems to him to be) such little activity.

Right now, you are probably best suited to be his short-term memory. To be his financial advisor. To be his medical advocate. To be his anger management consultant. To be the person who finds appropriate rehabilitation for him. Etc. Etc.
To be his everything. All of which I am sure you are doing right now.

There is no "right way" to deal with things. Everyone's brain injury is different; even though there are some commonalities. It is good that you know he is "not ok".
Reach out to your local brain injury association for suggestions of what you can do. (I don't know what country you are in so that may not be possible.) There are plenty of brain injury rehab programs mentioned online - check though some of them to see if they address your husband's deficit(s).

Keep a record of what you've tried, what you've found. Something to show the medical person (the one who is well versed in brain injury) of your husband's progress.
It can also help you - to see the progress, when nothing seems to be working. (Just remember - progress is probably not linear. What he could do last week, he may not be able to do today.)

Best wishes for the future of you both.

I’ve just come across this site ad the comment by Caroline on 8/11/2022 struck a cord with me as my husband sustained a Diffuse Axonal traumatic brain injury o 12/11/2022. It has bee very difficult coming to terms with the effects of a TBI on a loved one. Six months after the accident I spent 6 months with a psychologist and a physiotherapist for stress related headaches which has all helped enormously. My husband was also under the care of an Occupational therapist, a Speech therapist and for the past 6 months a Neuropsychologist. All these professionals have certainly helped however as a carer you also need to take care of yourself. It’s a tough journey for the family as well as the family member with TBI.

Great description of how it feels. This is what I've felt every day now for over 2 years now, though it's so hard to explain to anyone who hasn't experienced it. I'm continually frustrated with so many that think I'm making it up or exaggerating my experience (you look good to me so you can't be suffering). In reality the opposite is true; I tend to under report how I really feel and try my best not to complain. Thank you so much. I truly needed this right now and am grateful I found your comment. I wish you all the best on your journey.

Even though my injury was mild, I am still facing a lot of frustration with fatigue and emotional stress. It’s also my second year and even though I am a lot better, the struggles seems to also change with me.

I’m glad I’m not the only one who under reports my problems. Just that people stop believing you when you look “normal” from the outside.

I don’t know how to get to that acceptance phase just because I’m at an awkward places where my symptoms are mild enough that I can push through them but not enough that ignoring them will severely set me back.

Being at an age to look for work that is suitable for my current state or even just building that courage to get back to the grind has been eating me away mentally and physically.

Suggest adding to related content: “Having a brain injury was never the plan.” and
“A brain injury support group could be the best thing that ever happens to you.”

I had a 6m fall onto concrete about a year ago. I was 18. In a coma for a month.

I don't no if im the only one who has to work on not playing the disability card. often i do not correct people when they assume stuff is because of the injury. I am getting better at it. I know i need to stop as its unhealthy rewiring of my brain.

It becomes an excuse to yourself and you let your self get angry and stuff.

Hello, my name is Melody Nofziger. I appreciate your comment and insight. My boyfriend (18) recently went through A subdural hematoma. He is having difficulty with recovery and his emotions. He says he wishes he would be able to talk to someone who is “like him”.

Hi , I had two subdurals three years ago ...Was recovering slowly, then passed out driving and had Grand mal seizures and have been put on meds ...lost my licence for 10 mos. Doctors said it was scar tissue from original injury .
I am 67 now , I ride horses , active in sports BUT now it’s a struggle every day
The worst is most people don’t “ get it “ ...they see u , say oh you look great or when I say my memory is bad ...it’s always “ oh everyone has that “ !!! Not even close ...reading, writing, memory lapses , frustration, sleep and the list goes on ...
Hang in there ...

Hey. I have had a tbi sense 17yrs old for 7 years, im 25 and have 3 kids with my husband. I have 8 titanium screws in my head and frontal temporal lobe damage. My husband takes care of me a lot. Though im capable, there are many things i still struggle with and have been able to learn we would be interested in talking with you both♡ lots of love and healing

The best description of what,”we” go thru. Was a 4 year veteran of the nyc fire patrol and a 29 year veteran of the fdny. My career ended after failing a medicos due to etc lung disease. I continued to work d Cade’s after 911. Retired under the trade center bill and moved to a nice healthier area in no. I was doing work in my 2 story garage and fell at 56 yrs old. Woke up from a coma and ventilator a month later and was transported to Kessler still on life support. Spent another three months learning to eat, walk, and talk. Was paralyzed on left side. The doctors were shocked, I walked out of Kessler. The struggles I have and have had she describes so well. Would love to speak with her and others. Thanks, Don

Hello, my brother had a fall from a 3 story building and just got moved to Kessler 2 days ago. Your story really resonates with me so thank you <3

I am so proud of you !!!!! I was 20 when i was hit by a van ...shattered my pelvis,my face and scraped up and banged up all over.. I have bolts and chains ( i always say the bolts and chains better be gold hahahaha ) holding my hip and pelvis together! i know it's not the same, but i was on a lot of pain meds and a ton of other pills ( i learned to cope with pills ) now i am 54 and got very sick 5 months ago and have not taken any pills !!! Except for what the doctors gives me now...I am learning everything over now too!
I have a friend with a brain injury... I decided to look up brain injuries to help me understand what he is going threw..i came across your story and others and i feel like i am going threw sorta the same thing ( i don't want to minimize your injuries at all!!) I am thankful because i came across this site because i can explain to family and friends and for me most of all to understand what i am going threw.
Thank you for being so brave to post about your accident :} Take care and keep strong !!! :}

Hi Don 11/30/19 Thank you for your service through the years. It sounds like you are on your way to a remarkable "recovery". I hope your doctors have recommended followup out patient therapies. Finding a support group and folks who "get it" is another important piece of the journey. There is a Brain Injury Association in most states that can help you find a support group near you.
Never Give Up, no one can know what the future may bring, Barbara

Thank you, thank you, for creating this article of hope and instruction for Care givers. I am caring for my beloved wife and all that I can but this is one of the most valuable articles I read and will further help me in guidelines for her care. I am forwarding it to all me family and friends!!

I have been knocked unconscious at least five times, the first time 76 years ago at the age of 12, when my bus was hit by a train. I am uncomfortable with crowds, loud noises and bright lights, and I have trouble remembering both faces and names. I thought that this was just me, but it could well have been brain damage. But hey! I am still around.