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 (757)

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.

Dear September 2nd, I am a survivor of 21 years and when I am fatigued or stressed, the difficulties from my brain injury are magnified. Sometimes it feels like I am set back 15 years - BUT I know it is temporary and I will function better when I am less stressed. So my question for you is: could this be temporary, has anything changed in your life to cause you more fatigue or stress than normal? Take good care.
Dear August 8th, please look up the Brain Injury Alliance of Oregon or call them at 1-800-544-5243. Take good care.
i am 25yrs post tbi car accident to right frontal lobe & counter coup. It has been a hard road and still have the tiredness, depression , memory problems, brain fatigue.; but look like nothing is wrong w/ some facial scaring. sometimes i feel like an alien or something bc not many people understand me. Have been to therapy for many years which does help w/ the right doc==CBT cognitive behavior therapy. the TBI magnifys personality and the brain has a swiss cheese effect (memory has gaps if you will) You are in my toughts and prayers. Therapy from 16yo until now has made me strong willed & not wanting to ever give up on yourself. You guys are strong and powerful.
Hi. I suffered a severe head injury 20 years ago. Damage to the frontal lobe but not sure which side. For the most part, I think I've been okay but recently I've had some real problems. Major confusion and just feeling of being lost. Im supervisor for major drug store and took all eight drawers back to balance them, and totally forgot to count money and secure it. The poor opening manager walked into office with $6,000 laying around and paperwork not printed or anything. Its just by the grace of God that I wasn't fired. The job is very stressful and maybe too much for my mind. I do have an appointment Sept 11th with Neurologist. Is it possible to have problems this long after? I was in coma for 2 months and had a 15% permanent disability. If anything was explained to me I don't remember. I thought I had it beat. I guess I will find out the 11th. This article really does help. Thanks!!
This is really so awesome and I'm thankful I found it. I've been researching various areas I could study in college to assist other people like me, people with brain injuries. Just 7 short months ago (but seem like for-ev-er!) this upcoming Wednesday, I suffered a (grade 4-5 on the Hunt and Hess score) ruptured brain aneurysm somewhere in the right Sylvian Fissure. There is moderate softening of my right temporal lobe, and also some right frontal lobe damage. My, oh my. My aneurysm was a complete shock because we didn't even know my brain was harboring that little ticking time bomb. When it ruptured, praise God I was at home and my mom heard me hit something in my room/gasping for air. I have almost 0 memory from February 4-February 13, I'd say. It's really crazy and I had no idea, so to be "normal" then wake up with a brain injury in an unfamiliar hospital is insanely crazy. I'm only 24, also so it's doubly shocking because I don't meet the statistics for brain aneurysyms. I didn't (and don't) smoke, have high blood pressure, or anything much of a risk factor. I drank VERY occassionally (and light drinking at that)and it wasn't binge drinking, either. The only thing we can think of is that my mom had two family members suffer ruptured aneurysms, so perhaps it's some genetic thing? We don't know. All I know is that I'm so grateful to be alive, and I love God for giving me life again. I'm using this "second chance" to completly glorify Him and I definitely want to help people like me. My "brain buddies" as I refer to my fellow brain surgery/tumor/aneurysm/abnormality friends haha. So thankful for this article. :)
Sometimes I ask myself who has the true brain damage. Those afflicted with it, or does who do not or will not understand such easy concepts like those written by those concerned on this page. Where is human sensitivity and human compassion these days? And I don't mean human compassion, as "having pity on someone". It has nothing to do with pity, but plain and simple human decency. I am not a religious person, nor do I directly involve myself in such matters, but as in any honest and healthy life philosophy, this saying from the Bible says it all: "So in everything, do to others what you would have them do to you". It is so plain and simple to understand, and yet, there are people who still do not follow this simple teaching. I repeat my statement: who are really the brain damaged ones? When I read each and every sentence posted here, I was wondering what these people must have gone through, in order to feel forced to express something that should be more than obvious, unless of course, one is dumb, or a rock in the desert... I don't know the people who wrote them, but to all, and many more around the world, I can only wish a swift recovery (at their pace, naturally...), and a very happy and prosperous life.
My husband suffered massive frontal lobe damage an a subachnoid hemmorage last august 18,2012, he suffers every day and I suffer with him. My heart goes out to anyone that goes through this. I wish there was more help for TBI injuries! We are located in Alabama an there is basically ignorance an no emphathy for his pain. I wish for everyone to not have to suffer alone an get some help for constant pain, return to normal life, and struggles of daily life! Because of TBI, life is never normal again! We appreciate each day without a seizure or major problem. Thank you for the info on this site!
As I am reading this I feel relieved but scared. I have only been recovering from TBI for 5 weeks & am finding it very difficult as I feel guilty & frustrated. I see how my family are suffering by not having their mum/wife back to normal. They do not quite know what to do or say. It is hard to see them struggling not knowing what they can talk to me about, not to cause me stress and not knowing how much I can actually do. This web site will help them understand more. I experience nearly all of symptoms people have explained every day. It’s hard to come to terms with and not knowing how I will be from one day to the next, but I thank God I am alive and that I have my family. Thank you for such an inspirer ling site. J Sparkes England 23/8/2012
Well done. Some things to add: 1) In the earlier stages of recovery from TBI, we may not know we have physical injuries too because we don't remember what we were like before. So please have us fully examined by doctors experienced with treating victims of the type of incident that caused the injury.. For example, for years after the injury I experienced neck pain when I tried to tip my head back. I would just raise up my shoulders to give my neck support and reduce the pain. I didn't know it was not normal or to tell anybody about it. Now my neck movement is reduced to the point where people I recently met have commented on my neck's lack of mobility. 2) We may know we are adults and that we should be able to do things like drive a car or drink alcohol, but we may not understand why we are not allowed to do those things or why we are not being treated like an adult. 3) Alcohol consumption significantly impedes recovery. 4) We don't know what you're going through and may not understand why you lose patience with us. 5) We didn't do this to you.
Thank you, so much for the information. My sister and I (We) have been looking for "triggers" on what her husband should say and do to not make the agitation part worse. he has no clue and does not know what to do. I have been her support system and am trying to find support on the TBI in the state of Oregon. If anyone knows would you please let us know. Thank you again for your site it hopefully, it will help us understand more.
Wonderful. I had a large intraventricular meningioma removed 16 years ago, and these are the thoughts which have taken almost that long for me to put together for my family and friends. You said them beautifully, and help me also know I am joined. :) I will share with others. Thank you! nancy, missouri
I had a TBI about 12 years ago. I fell headfirst down a full stairway. My right forhead hit a step which I beleive caused me to flip over as I landed on my back, my pierced earrings were out of my ears and lying on the basement floor, beside my head and postion of my body was on my back with my feet right by the last stair step. I have no memory of any of this, and was taken to ER by ambulance. My first memory was awaking in the middle of the night, in a hospital bed and throwing up. My eyes were swollen shut and within a few days most of my face from nose up was totally black and blue. I was hospitalized for 3-4 days and then home. I had numerous tests and was diagnosed with a traumatic frontal lobe brain injury. Of course I have experienced most of the things, other people on this site, have written about. The thing I am wondering about is emotions. Not that I show too much emotion, but that I show too little. Has anyone experienced this? My life changed a alot after this injury. My life had always been filled with a lot of stress, death of husband (by suicide) at my age 29. Left with 3 childred to raise alone, lots of mistakes made, my own alcholism (now in recovery 30 years) along with what became 2 alcoholic children. My Son died 2 years ago after a pain filled life, emotional and physical. Again, my question on lack of emotion.
I had a stroke 3 years ago, and still have relatives expecting me to do more, more, more! I would like to, but can\'t. I hurt physically. I\'m depressed, I\'m forgetful. I get so confused sometimes. But, no one seems to understand. I would like to share this article on my facebook page and ask my friends and family to please read it. Maybe then they will show a little heart. Thank you for this article. It does give me hope.
Really really good article. I have been sending it to everyone. Thank you for sharing this with us x
Barbara, Many, many years ago, I suffered strokes during several brain surguries, so I KNOW of what YOU are going thru! Please try to connect with me, because, I feel I have so much to offer you: lstuckel@earthlink.net In the begining of my recovery, all that I did was cry, cry and cry, because it was hard for me to understand everything that was going on. I was a very positive person before my medical madness, so I was missing myself. Here was a key for me: I started to SEARCHED for the positives, in the negative time of recovery, and that changed my whole attitude! Good Luck and May God Be With You! Lisa A.Stuckel
I was in an accident 1 1/2 years ago and I am still new at this. I so want to get back to where I was in life. I really thought I could , but jokingly said oh this is my new way of life. I now have some insight as to the fact that , this is how its going to be, good days and bad days. Severe depression , have meds for it, sometimes they kick in to slow for my likes. I so can relate to the fact of being overwhelmed, and needing to be alone, for quite time.

hey that's really a great post and i like this and thanks for sharing it with us! Mobile Reviews

I've two brain injuries. The first accident when I was two years of age. So, basically, I've been living with TBI my whole life. And I had another TBI at age twenty-eight. I've a blog, brainalter.com, please visit it and I would really appreciate you becoming a member and/ or leaving a comment: but only if you so wish. I'm glad to have found this site and would like to become a member(or maybe I already am?!). It was soothing yet also so refreshing to read other TBI sufferers ideas. Thanks.
As a 15 year survivor of a severe traumatic brain Injury I am still finding things by the grace of God that help me to cope. This was the most concise description of what I go through. My frontal lobe was damaged and tried for years to fit in to what the world told me that I should be. Now I accept that I am different, but in a positive way. You would never know anything was wrong with me, but it is. It took me forever to accept it. Now I try to find the purpose that God has for my life as He is the one that ordained my survival out of a comatose state. Thank you for posting this. It is exact for me....maybe different for another type of brain injury...Great stuff.
I\'ts 2am and I can not sleep thinking how can I help my son better even during a simple conversation,my son suffers TBI since nov/2010. He is improving but sometimes there are many misunderstandings at home. Thank you for this article,I will read it everyday when coming back home from work so I don\'t forget.
Thank you SO much for posting this! My accident was Feb 2008. These are things I can't make people understand. Words do not come out like they used to, I can't spell like I did (I used to be a writer), and my math skills are now awful.. I sleep ALOT. What comfort and sadness knowing I am not alone..
Thank you very much for this article! Here is a poem I wrote . Have you ever had an injury that was Life Changing? I have, Not that I’m bragging. I’ve been concussed for 9 months, or More. Having faith in the doctors, they try to Sneak out the back door. Some are more Heart-felt then others. These gems I’m Blessed to have them as my onlookers. The prescription? Hibernation. The symptoms are as follows: Headache, that you can’t fake, Dizziness, I look like a mess, Ears that ring, worse than white noise, it starts to sing, Confusion, not an illusion, Forgetfulness, we had tests? Vision problems, they are bothersome, Emotional, not like once a month usual. I’d go on, but I can’t remember. That’s pretty good. Some days don’t get any better. The ironic thing is, people Forget, Ignore, or don’t Know. This is a mental injury that I must tow. I try to stay positive keeping my mind off my Limitations. It’s hard to do when you must remind others of the Frustrations. I tend to over analyze things like this. A mental game trying to keep myself Bliss. “When someone breaks their ankle people see them limp. But with me, the only way people see me in pain is if I post it on a blimp!” For this reason teachers, friends, and family treat me the everyday same. But on the inside I want to be Consoled, not to be confused with looking for fame. Many do confuse the injured of wanting as such. We just want to Heal ASAP, to carry on like the rest of the bunch. Being in this state, nothing I can do all day. I am sick of being sick, I Do Say! Being a broken record is the only way to get my point across. I hear stuff as: “it’s amazing how you are holding up, trooper, and you’re boss.” In this time that seems to never End. During these ups and downs I do have few who serve the title of Friend. They say how I’m still enjoyable when I am in such excruciating pain. They help me keep myself sane, while looking out for my brain. I Push myself all the time. Especially when it comes to making these lines rhyme. With this concussion it’s bad that I’m not the person to do it half way. Everything I do is what shouldn’t be done, I must now seriously pay. My Unknown end of my story goes on. Days go by one at a time, sometimes they laugh as I am Withdrawn. My dreams are something I will never give up. My faith keep me in His loving arms drinking of his promising cup. For my hopes I will Wait, Wait, Wait. I Will Have My Promising Dream Of My Own Fate.
Thank you for this concise article. My son suffered a TBI 1/1/2 yrs. ago. He is recovering remarkably, is working for the summer, went back to college and going again this fall with a reduced load however, expecting too much of himself. He wants his old self and life back. Almost there but his speech is not what it was yet and when you're majoring in broadcasting; that's tough. On to Plan B.
Dear ALONE in Texas and anyone who is struggling with depression. There are three things that helped me get through. #1 was to learn that I was going through a grieving process and that it is a process to adjust to one's losses but not a permanent place. #2 was to start a grateful or victory journal, writing down 3 three simple things that made me smile or that felt like progress, at the end of every day. This simple activity shifted my focus to the positive things I could write about every evening and made a tremendous difference in my mood. #3 was to connect with spiritual guidance, whatever that is for you. This can be any group that accepts you as you are and makes you feel good about yourself, as you are. It doesn't have to be organized religion, for me it was the practice of yoga. I hope this is helpful. It won't always be this hard, it does get easier.
It's a test and that is all life really is; it's just a test and those people who have sustained a brain injury are being tested more so than most and I know it. I am thankful for what I have gained rather than being resentful over the things I have lost. Nothing really shakes me anymore; nothing.
Thank you so much for this article. It is a great deal of relief to know that what I'm experiencing is not just "in my head". It is a true phenomenon and so well explained in this article. I haven't been fully able to explain my cognitive issues to family. I will most certainly be passing this on to them and hope they will now understand.
TBI surviver for 11 years now. Memory problems still and is REALLY hard to do this by myself but theres no other way!
Been dealing with this ALONE and have lost the will to live. Dont have anyone to talk to and isolate myself cause not a soul cares or tries to help. PLEASE, I'm stuck in Odessa,Texas and NEED to move. If theres anyone reading my comment who needes a roomate I'm 31, female can cook,clean and am searching for somewhere to start over. Im honest,loyal and trustworthy. taushaburkholder70@yahoo.com
This really helps understand more I have been looing at everything I can find my 24 yr old son was in a car accident on 2/18/12 and has severe brain damage we are still in therapy it is really hard, especially not knowing anything about TBI's. I can't imagine anyone going through this alone and not being there for thier kids no matter what and being patient with them it is your responsibility to make sure they are OK. Keep going with the information people need to know as much as they can to help thier loved ones with tbi.
Thanks so much for putting this into the words that I couldn't. I could never come up with the words to let my family and friends know exactly what I was feeling and going through. Now I am able to share my feelings through this article.
This site is just incredible. Thank you sooooo much. I have found a way to share with others and make it simple for them to get as much info as they choose. I am recovering from what is now considered a moderate TBI. I am 56 years old and recreating myself by choice this time around rather than reacting as like when were are children. My goal, and it's happening, is to be better than I've ever been. Challenging; being forgiving of self and others a great muscle; and, it's happening. I am different and I am coming to be a person that I have dreamed of for a long time... More to go. 5+ years out and continuiung the journey. What else is possible for all of us? My best
This is a brilliant article, i am going to show it to the staff at my daughters school, i believe it will help them understand her problems much better. She has a brain tumour, and has had 8 neurosurgeries to remove it, which have all had an effect on her as though she has had a brain injury.
Hi folks. I'm writing as a caregiver of a husband with advanced dementia -- brain injury for which there is no cure. Your words are WONDERFUL and HELPFUL and all of us who love you will nod as we read. You are gaining and growing stronger and recovering. I pray the people around you take these words to heart. I will think of them often as I take a deeper, slower breath to deal with the things that dementia has stolen away. I wish you well, and a whole, steady recovery. Thank you for teaching us.
My son was diagnosed with a malignant brain tumor 20 months ago. After 4 surgeries, 3 rounds of chemo, and 5 weeks of cranial radiation, he is doing well. This article was brought to my attention by the fabulous Children's Brain Tumor Foundation. Describes my son exactly. I've been sharing this article so that people can better understand his situation. Thank you so much for this wonderful piece!
Fantastic, finally found some information to pass around the family, so they can start to understand what we have been trying to learn for 5+ years, after my 12 year old daughter was knocked over by a car.
I have dealt with a lot of these issues going back to my first brain tumor and first brain surgery when I was 6 yrs. old in 1984. To some degree the technology wasn\'t really there for what they can do now but starting so young with 2 tumors and 4 brain surgeries later, a brain craniotomy and lumpectomy I was able to compensate with the other side of my brain vs. people who\'s brains are fully developed and go through similar circumstances when they are in their 30\'s and up. I still have a lot of the side effects that I deal with on a regular basis and I know that this will be with me for life There are a lot of people that don\'t understand us and will never unless they go through this or have someone close go through this. The best suggestion I can give to any of you is don\'t let this label decide who you are or let others tell you who you are. surround yourself with a good support system and don\'t waste your time with the losers. They never will understand and karma is a b--ch.
This is what I want people around me to hear: Don't get upset with me if I say I can't remember. It's not an excuse....if I say I can't remember something, it's because I can't!
So true, all the points in this list. I have to be alone a lot of the time just to get things done, and am not sure friends understand how even years later, there are still big changes from how I was before the TBI.
Thumbs up! I agree with every single statement! How true! Those who wrote what they experienced are in the way to recovery! How many are those who give up?!
Thank you for writing and posting this! I could not have said it better. TBI, mTBI and CTE is so misunderstood so survivors have to not only contend with living and coping with the condition, they also have to deal with insensitivity that often borders on abuse!
Thank you so much for this, as it has been a lifesaver for me to explain to my friends why I am a bit slow and seem spaced out... Thank you! Murray Dunlap
Dear May 24th, I'm sorry you don't feel like you have any supportive people around you. I hope you will seek other supports like counseling or call your state brain injury association.
Nobody wants to understand me and dosen\'t. I do suffer from post tramatic stress and anxity because of tramatic events in my life and have had several head injuries. What I feel, is that people are trying to make me more sick and I feel sometimes overwhemlb becausre of people being abusive towards me instead of being supportive and understanding. That is wrong what people are doing to me. I feel sometimes that my heart is going to give out on me and that someone that knows me is causing me to become stressed out. I won\'t be surpried if my heart give out.
Woops! In my previous comment, the reference to the posting on May 16th should be March 16th! My apologies for any confusion. As you can probably relate, that is what happens when I am tired! Barbara
From the author, Barbara Webster: Dear May 16th and anyone else who would like to know more, please contact Marilyn Lash at: orders@lapublishing.com, the publisher of my book, Lost and Found and this article. Many thanks for all of your thoughtful comments. I am deeply touched to know that so many find this article helpful in some way. With gratitude and prayers for our continued rehabilitation and healing, Barbara
I love what you wrote. It is 100% applicable to children with autism as well. Joyce Tran, author of "Teaching Your Child with Love and Skill: a Guide for Parents and Other Educators of Children with Autism, including Moderate to Severe Autism" to be published by Jessica Kingsley Pub. in May, 2012 joyceshow.wordpress.com
Thank you so much for putting this into words. I've been suffering with TBI since 2001 due to an auto accident. I deal with every single one of these bullet points each day, but fall short on the ability to find the words to help explain what I'm dealing with or why I have to do things as I do. This is extremely validating and very much appreciated.

Great article! thank you for writing it , hopefully this will help family members and friends understand a little more what there loved one is going through...

I love this article. I just recovered my sense of smell. This is not a lie, I was using a males perfumefor over a yar. withou noticing. This past week I woke up and I was able to smell... I spend over $400 in perfume. I lost it but I just found it, memry is still an issue but I know I am doing much better. PLease be hopefull, we have reasons to be.
I had an AVMTBI 6 yrs ago and lost all my memory. I can relate to every word written in this article. I was going to college to become a RN working as a CNA and I no longer can do so. My physical abilities are xtreemly limited. I have been going from 1 specialist to another and they seem to me that I am more of a bother than wanting to help. So I am going to take a break from them. I have enough problems I do not need there negative disposition.

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