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 (767)

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.

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

TBI Survivors need lots of extra time to PROCESS everything that we HEAR, READ & SEE. PEOPLE TEND TO RUSH THROUGH CONVERSATIONS AND DIRECTIONS, SO BY THE TIME I FIGURE OUT WHAT IT MEANS. THEY ARE ONTO WHATEVER IS NEXT. THAT LEAVES ME FEELING STUPID & FRUSTRATED! TBI SURVIVORS ARE NOT STUPID. OUR I.Q.s HAVEN'T CHANGED, THE AMOUNT OF TIME NECESSARY TO EXPRESS OURSELVES HAS CHANGED. IF YOU THINK IT'S HARD FOR YOU, IT'S IMPOSSIBLE FOR US!

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.

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

Wow!!
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.

Under related content you should include another article from the Framingham Support Group: Having a Brain Injury Was Never the Plan

I have been living with brain injury for 10 years can you help me find legal help as it was used to bully and shun me. It was used on me to cover up brain injuries in a school here in Santa Fe affecting 100 children and myself. I was also injured on purpose; by chemicals and nearly died "I was dead man walking" is how I felt. And just this morning I am feeling what I know of myself; halalulia! your list of help was wonderful and on Patience I would add Love without judgment. and to really listen to us and let us tell our stories with out interference (I'm a humanistic playful psychologist and telling jokes and play are very healing and the earth and environmental connections greatly speed up the healing.

My brotha went through a brain injury and the first Informative piece really resonated with me. As much knowledge i have i can gain more. I read comments on how we much educate others. This must start in school. In Canada, we have the option to choose electives (optional courses in high school and university) but what i see that can happen is making courses that is as important as history or mathematics that can be implemented in school from an early age which actually gives children help and guidance for whatever that may happen in their life (not always having to be a problem but even how to enjoy everyday moments) . It doesn’t matter if they learn a lot, even something as small as doing your bed may be life changing to one child. It is those kinds of teachings that resonate with kids that will stay with them for their lives regardless of whatever that may come their way without a fear or doubt to their happenings because they were prepared to take on a challenge without the need of guidance or help.

Thank you for this article. My cousin was in a car accident almost 2 weeks ago and the extent of his brain injury is still unknown, but severe. We just hope he's still there, any part.

My boyfriend has TBI. He was hit by a car while riding his bike in Central Park. Never give up on loved ones. They are in alot of pain. But take care of yourself too. It's a hard road

My husband sustained a TBI several years ago. Since then, he has had difficulty at every job which he has held. Issues range from confrontation, difficulty following instructions, difficulty following through with tasks and difficulty maintaining professionalism in the workplace. He has recently had a neuropsychological evaluation which suggested that timed jobs are not a good fit for him. In hindsight, I can understand why he has had so many troubles, since every one of his jobs had a timed aspect. He is able to drive, but always needs to use GPS, since he cannot remember places well. He reads well, but may not always grasp the full meaning of some statements/sentences. He can follow instructions which are not compound or multi-faceted. He really wants to find a job which will make him fell confident and fulfilled. Does anyone have any suggestions for some jobs which may work well for him?

Dear 9/20/19. You build confidence through successes and after a brain injury small steps often work best. Think about possibilities related to things he loves to do like hobbies, even as a child, and then how he can get involved in a limited way. Volunteer opportunities often work well to start. They should be much appreciated and they provide a low risk environment to explore the challenges and figure out what might work. Best!

I have lived with a brain injury for 8 years now and the problems with others not understanding is one of my biggest obstacles and unfortunately it’s no ones fault but we need to do more to educate people so when they meet someone who has difficulties in everyday life they no how to respond!!! I was fourtunate enough to have one of the best teams of doctors around me but it took me years to understand that in order to be a survivor I must thrive and accept what has happened and learn to live with what is now a new normal I still forget and get overwhelmed and anxious and yes crowds are still challenging but I wake up and smile everyday because I AM A SURVIVOR doctors said I would never be able to have kids and I have a beautiful 8mt baby boy and live everyday to the fullest even with my crazy brain!!!!

Kudos to you for Celebrating Life after Head Injury! First, we had to educate ourselves. Had YOU ever heard of TBI? Me neither. Begin by teaching your family that you need more time to Process their Questions, let them know what to expect regarding more Time, dealing with Aphasia (they never heard of that either!) & the many "tricks" you use several times each day re: Short-Term Memory. Now, we can BEGIN to educate the Public & those we come in contact with most. P.S. Congratulations on your baby boy!

People are just making me my impossible life more challenging!!!

Useful information shared..I am very happy to read this article..Thanks for giving us nice info. Fantastic walk-through. I appreciate this post.Thanks for sharing....

Wonderful post.Thanks for sharing this information.Keep it up....

This article is truly amazing. My wife suffered severe TBI when she was 17 years old as a result of a hit and run. I have been very impatient and expecting more of her. One thing I do know is that she is actually very intelligent, perhaps higher than average but I have been critical of her many times. This article has absolutely answered every question I have ever asked. I can see that I have done EVERYTHING wrong!! Thank you, thank you, thank you a million times!!! She is actually interested in training to be a rehab practitioner to help others and I was searching to see what training she can do.

Thank you. This article realy helps me towards understanding my husband.

Unbelievable. I am reading my experience express much better than I could. Thank you for posting this. I'll send it to my family (who have been wonderfully patient with me so far, and will appreciate this explanation.).

10 day coma, chemically induced. Woke up without the use of left arm. Skull was put back after brain swelling was down in 30 days. Learned to walk, use my arm again. Minor short term memory loss and partial numbness in left pinky and ring finger but still came back to be a chef of a successful restaurant. No stress, anger, dis-organization or behavioural problems at all. If you believe you can recover, the brain believes it and will heal itself if you have a strong enough will. It takes time and practice but it’s possible.

Very good and extremely unusual to me to either read or especially hear from others or those previously close to me prior to horrendous injuries caused by some driving extremely challenged as I simply rode my bike home after work! It is very beneficial to hear others write about going through the same life altering experience and making it through alive and improving from the low point of the injury. Thank you very much! It is very greatly appreciated.

My niece is recovering in mercy hospital right now..4 weeks since her accident.She was in induced coma same as you.3 MRI's say no damage but it's been 4 weeks she still dazed but doing therapy..Your comment made me feel better..thanks

Thank you for this message of hope and encouragement!

Thank you so much for that. I have suffered a secondary TBI and there has been the stigma that hurt me all people first focus on is the emotional part and think it is a mental disorder. It seems that soon as you say brain injury people think omg she or he cannot control emotions and some believe us TBI survivors to be dangerous and that hurts me so bad.

Nothing more for me to say other than "Thank you" !!! ❤

I can't thank you enough for writing this.

In 2014 I was in a car accident where I suffered a blow to the head knocked that knocked me to an unconscious state where I endured multiple seizures. I was out for about an hour and was given the okay to go home from the hospital the next day.

In the fall of 2018, I wrecked a motor bike (going about 60 mph) and hit the road head first with no helmet. Again, I was knocked unconscious where I endured multiple seizures and was out for about an hour. And peed my pants. After several tests at the hospital, I was released. No brain bleeds, skull fractures, or anything to speak of. Except a swollen head and a blurry memory.

I recovered well from this considering the circumstances, but I can't help but feel a little different than before. There's a lot I could say here, but I pretty much just feel like my thought process is very altered. I do small things without thinking like top off my coffee with water or unplug an appliance for no reason. I recognize it shortly after and become frustrated. I also feel that I struggle more with finding words to start sentences and trip over my words often. It's even become almost a joke among my friends. My patience and social butterfly capabilities also seem stunted, but I wonder if this is the injury or just me thinking too much about it. I do feel over stimulated often. Seems like I need more time to process simple sentences more than others. I also get frustrated easily.

I haven't talked to anyone about these issues because they are hard for even me to understand and my injuries have been dismissed. But I also don't want to dwell on them because it is what it is. From what I've read, it seems like we are mostly on our own in understanding ourselves and how our injuries have impacted us. But if we're still living, I think the best we can do is embrace our new selves and thrive on it. I won't pay a lump sum for someone to tell me the things I already know.

I have never written on any forum before. I hope someone finds value in this. I hope we can connect.

One love~

I do hope you find comfort in these articles.... please try to find a support group where you can share your symptoms... and please don't underestimate what you have gone through... you are doing well to recognize your limitations and find this website... all the best and don't give up hope.

My wife suffered severe TBI as a result of a hit and run when she was 17 years old. She is now 43 years old. She was in a coma for six weeks. She has all the symptoms that you have shown in your article and I have handled everything the wrong way and the article above has put me straight. Now I can see my wife is not alone (neither are you) in her behaviours and responses and reactions to things. I have been a complete utter idiot BUT I will understand more with what has been written, here. Like you, my wife is actually very intelligent and I see signs of that virtually every day. Thank you for your input

Dear Rachel, 4/25/19; if you haven't found a support group for brain injury survivors, I would encourage you to inquire through the Brain Injury Assoc. in your state. They can be very helpful, a place where people "get it'' and letting you know you are not alone.
Never give up, things can get much better.
Barbara

This is a well done article! I was actually in tears reading it. I have a VERY large family who often love to have family gatherings. I often do not attend any of them. I am a RUPTURED BRAIN ANEURYSM SURVIVOR! While my family knows that I have changed they often make me feel bad for not attending the events. Reading and sharing this article really helps me understand that what I deal with daily is a real situation and I am not alone! Thank you so much for putting this in writing! #BAS2014

That is beautiful. Thank you. It helped me so much. Please keep writing. Bless you.

THANK YOU! I realize now that many people in my life just do NOT have the time or patience to deal with me now and this is NOT my fault and this is NOT on me. I need to cut those people OUT of my life and MOVE ON to healing.

I NEEDED to read this and I am handing it out to EVERYONE i know and to everyone I meet. And i am explaining to them that I am NOT mentally ill and i do NOT need to be punished or chastised, which is how I have been treated. I am SICK and I deserve COMPASSION. Thank you thank you thank you

my grandad is in a coma currently in hospital after a fall 9 days ago. He has swelling in the brain. we are waiting for it to heal so that he will come out of his coma. Doctors are very negative but i feel he will make it through. anyone else been in a similar situation?

There is hope! I was hit by a car on my road bike and in a coma for ~7 days. The doctors told my wife to expect the worse, e.g., that I may not remember who she or my kids were, may not be able to speak, etc. God willing, I woke up on the ~7th day and, while I couldn't physically hold anything with my hands, I was able to remember everyone and eventually speak. I am a walking miracle and hopefully your grandpa will be too!

God bless you

In my family's experience doctors tend to give you the worst case scenario. Stay positive together for your grandpa. It will be a long road and he will need you all. My sister was in a comma for 2 weeks with severe swelling and had to work hard to learn all over again and 4 years later is still dealing with her new reality but doing just great. Good luck to you and your family. We will say a prayer for your grandpa.

I've been through a lot of this. I couldn't convince anyone, including my doctor, that I was hurt for nearly nine months so was slow to heal and deal with some of these issues. Thank you, I thought I was the only one having issues!

Spot On✌️

Thank you for finding the words, that I could not. This is very informative for all family members and friends. Please continue to post information. It's so very helpful. Thank you!

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