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

Barbara J. Webster, Lash & Associates
Lost & Found: What Brain Injury Survivors Want You to Know

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

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 (626)

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.
need to get in contact with the writer of this Barbra Webster, to talk about making this go even more public.
This list is well written-I will show it to family and friends,some 'do not get it'. I accidentally shot myself in the head about 3 years ago while test firing a rifle I'd just fixed, a ricochet from a .30-30 hit just above my left eye. Fortunately, it did not penetrate my thick skull. It sure rang my bell, though! Since then, no short term memory, almost 'flat' emotions, no libido, easily distracted and confused, etc. All these have endeared my me to my wife, NOT! The main problem I've found is my pain tolerance disappeared.Things that were an annoyance before the TBI are now excruciatingly painful, which makes the degenerating, arthritic joints and the gout a masochists' delight. I am not a masochist.
I absolutely love this article. It has helped my family and I tremendously. I'm a brain aneurysm survivor. I wish that Facebook would allow this to be shared instead of blocking it as "spammy." In honor of National Traumatic Brain Injury Awareness Month, this would the perfect time to add to world awareness with this article.
I read this article and was in shock!! I have never sustained a traumatic head injury. But, in 2008, I had a tumor on my pituitary gland that ruptured, filling the cavity of my head with blood. It took six months before all the blood had dissipated. At the exact same time this tumor ruptured, I developed severe vertigo, migraines and cluster headaches. It took several years, but my neurologist has ran all the tests and will most likely diagnose me with Meniere\'s Disease (a disease of the inner ear) at my next visit. They claim the Meniere\'s is unrelated to the tumor...just bad luck that it all hit at the same time. Reading this article was a Godsend to me! I have the exact same problems as many of you. Well, not exactly as I have never had to undergo any type of physical therapy. And I sure don\'t want to take away from the pain and suffering that all of you have gone through. I just wanted to point out that all this can also be true of someone who has had a brain injury not caused by an accident.
Thanks for doing the word-finding for me! This article is exactly what I wished so often that I could explain to people when I have problems from my brain injury.
Hello, I suffered from a T.B.I last year around this time. This past year had been hell on earth. I nearly almost died at the beginning of the month because my brain wasn't getting the proper nutrition to heal. It was as if I had the gates of Hell in my head for this whole year. I had severe confusion, Pure-O ocd (the doubting disease), horrible memory problems, massive migraines, no motivation to do anything (even live), no good emotions,anxiety that caused me to go into flight or fight mode, horrible depression and almost a character change. But, by faith in Christ and refusing to die I did some research on what can regenerate brain cells, I found that changing my diet to all organic foods(Salmon, chicken, walnuts, flaxseed, blue berries, eggs, almonds, 100% extra virgin olive oil, and not eating anything processed, packaged or unadulterated, drinking raw milk and pure alkaline water, fish oil vitamins, B-complex and St. John's wort could do so. It has been about 21 days since I have started this diet along with excersice and I can say that I am almost fully better. I have no migraines whatsoever, my thoughts are aligning up, I can sleep like a baby, and I have motivation to live. I am still struggling with the OCD, but it has slowed down alot and I expect it to leave at this rate I am going. I share this with those who are struggling with a T.B.I. I had to leave school to come back home and heal properly. I am hoping and praying that I will be fully recovered in the next couple of months. Praise God! There is hope friends!
I became a Neurofeedback practioner to help a 53 year old friend who\'d had an open head TBI at the age of 5. He was in a coma for 30 days but survived. His subsequent life was a living hell. He suffered from hard core drug and alcholol addiction until he was 50 when I met him. Last hear he had a total shoulder replacement and the general anastesia really knocked him down. Neurofeedback has now made a huge difference in his life as well as other TBI client I\'ve worked with. Effects of Anastesia were completely lifted, Orgainization skills improved markedly, sleep improved, memory improved, depression lifted, stressors became less so. Neurofeedback is brain training on steriods and can rapidly accelerate progress with retraining the brain. Please look in to it as it can change your lives for the very much better in a very short amount of time!
Hello, i am a survivor of TBI, i have just recently been trying to make some friends on facebook, not really noing what i was doing, they have blocked me, cant even get to sign in, through my dissability, i have cognitive problems , i tink there is to much going on for me to coprehend, it hard enough having this dissability, the worse is putting up with peoples and businesses disriminating against me, my main focus on my facebook page was TBI,i am tring my best to make some friends as i have none , live by myself, now faceebook has cut me off, this was quite important to me at the moment, i am having a opperation tommorow, the general anesthetic really effects me quite badly, i fall into a deep depressive hole and feel like hurting myself, the facebook page was all i had left to keep me going, is there anyone there who can contact them and restart my page ,please. Paul Riddler
This website fulls me with hope, thank you for suppling a great place for people like me, who are TBI "survivors" Paul. Newzealand.
Thank you for providing this great website, there are not many if any groups here in New Zealand, i no i am not alone now, best wishes to all TBI survivors out there. Paul, Eternal optimist.
Greetings, my name is Paul, i live in New Zealand, i am a survivor of TBI, or as we call it here AHI, aquired head injury, back in 1991, i was a victim of a home invasion,i tried to stop the offender raping a lady at my house, he was much bigger than me and had a base ball bat,didn,t recieve medical attention till the next day,nearly died, fractued skull, after this my life fell to bits, i lost everything, my job, my house , partner, ended up homeless on the streets, pretty tough when you cant think straight, well thats what i used to call it anyway, used to get picked up by the police for being drunk and not a drop i had drunk, i suppose i was pretty angry back then, but then thats another symtom of TBI, the Accident compensation corporation of Newzealand found an easy out from caring for me, i was angry at what a specialist said, or didnt understand what he said , and cleared his desk, he wrote a unfavourable report, No Rehabilitation for me, i try nto to reflect on the past years to much because i get pretty sad and can slip pretty fast into a bad depression. I am 51 now, live by myself quite isolated really, my mum passed away 18 months ago, she was the one person who took the time to understand my dissability, the rest of my family , just kicked me out of the house 3 days after the funeral, not much empathy there. Anyway i have been given some strength from reading about other peoples challenges and successes, a lady said to me the other day , "your a survivor" to be honest there have been times in my life where i wish i hadn't been. I have another challenge going on at the moment, i have Kidney stones, the had to operate lythotripsy, think i spelt that wrong, anyway they used a general anesthic, for the op, after the operation i felt different, i felt really sucisidal, very dark indeed , they kicked me out of Palmerston North Hospital, the next day after the op. I have another operation sceduled for 15/2/2012, at the hospital, i pre warned them about my head injury, i am very scared that it will be even worse than the last time, they do not seen to care or understand, i was also given morphine and tramadol, and about 4 other drugs, i am pretty worried that this op could be curtains for me, sorry but i am worried. Before i got unwell with kidney stones , i found the best thing for me was to help people, and stick to a routine, keep my exersize levels up, and for me one of the most important sleep when you want to sleep, obey your body, be kind to yourself, i used to berate myself hard out for years, all this gained was varing degrees of depression, i also take 200 mgs of vitimin B per day, and get a Vb injection every 6 months, i think this helps to stimulate memory, oh well, at least i cant remember alot of the bad things that happened to me when i was homeless, lol, sorry AHI humour, hey guys and girls i look forward to corresponding with you in the future. Every day above groud is a good day, Paul Eternal Optimist. My email adress, ioablogs@gmail.com
It\'s just like someone climbed in my head and said: \"you\'ll be OK\" Thank you, and I will struggle on, as tough as today is. Just a year and half along, and I thought it was tough just to hear the words \"traumatic brain injury\". What\'s tough is today. \"... man waiting with patience\" = Henning
(sigh )8 years later the struggle moves forward hand in hand with jesus and thank you for my dear friends who make my recovery easier every day.
I needed this 20 years ago I could never explain to people in words what was going on in my brain but that explains it perfectly. Thank You.
Thank you so true, i had a hemmorage due to AVM removal and this is so true :)
This is such an excellent article and it seems to read my "mind". I was involved in a car crash and got a tree in the head through the door of an old corvette stingray which shatters as it is made of fiberglass. It wasn't until weeks later that deficits started showing up. I sunk into a deep depression, suffer from sleep problems which make brainwork worst. People outside my immediate family just don't seem to get it. It has been almost 8 years now and according to a recent neuropsychological testing done, I'm still at the same place. I have learned to deal with it for the most part, I'm on medication for the depression, anxiety, PTSD, and migraines. My life changed in a split second. I'm who I was before, just different. My husband says he loves his "second wife" as much as the "first". We've been married 33 years. Without the ongoing support and love of him and our 3 adult children, I wouldn't be here now. This is a great site.
This is a great article. I am 28 years old now, but I hit a tree when I was 16, as it came in the passenger door. I got a concussion from the tree on my right frontal lobe. I got TBI and have been slow since. Well, not slow, just how you described it in the article. I feel like it read my brainwaves, what ones I have left. Thank you
I SO CAN RELATE TO THIS..MY DAUGHTER IS 17 AND DEEP TBI SINCE 2007 FROM CANOEING ACCIDENT
Thank you everyone, that participate in this site; I feel like I am always 'work under progress', and understanding fellow challenged people's views is VERY HELPFUL! and finally, addition's towards a good attitude ....really is priceless~ David
FANTASTIC! - Its "about time" that someone got it right and finally wrote this down! I certainly could have used this in 1999. (year of my TBI) This information needs to be circulated to not only family & friends, but also to neighbors, employers and the general public. Brain Injury does NOT EQUAL loss of intellectual capacity! Thank you very much for putting this into a simple formate for others to understand. Hopefully with more of this type of education TBI can finally be addressed respectfully in our lives and communities. (TBI survivor aug. 1999)
This is great insight for loved ones of TBI survivors. My husband\'s injury date is approaching 2 years this week. After 42 years together it is a struggle for both of us to adjust to \" the new Jeff\". Through love & commitment the mantra in our house is \' this is a process\'. It took me a long time to gain the understanding that Jeff\'s lack of improvement was because he wasn\'t trying hard enough. We are in a much better place now that I have let go of the anger & have accepted that challenges God has given us. God has a reason.... & I trust that this experience was intended for both Jeff & I to grow. We are growing! The best statement I ever saw in writing ( & it\'s taped in a place where only I see it) is this: You don\'t recover from a TBI. You learn to live with it.
Thank you for putting this so well. I find I know what I want to say to explain my situation since brain injury but just as quickly forget and miss the opportunity to deal with situations where I am judged harshly. That is brilliant!
I was in a drowning accident 17 years ago. The effect on me has been profound and at times very hard to describe. People don't understand why I'm so tired and that I get really exhausted when they want to talk and talk. I am getting better, but it's very slow and extremely frustrating. I sent this to my Mum in the hope that she might get some insight.
This is absolutely magnificent. It is EXACTLY what the world needs to read & UNDERSTAND. I started a blog only last week to try & help others 'get-it'. I will absolutely be putting this up on my blog & will keep re-posting to push the message. Thank you http://abumptothehead.wordpress.com https://www.facebook.com/pages/Abumptothehead/207941139296925?sk=wall
The thing about TBI that bothers me most is that people who don't have it or don't know it mostly hurt the rehabilitation of it. Since mine occurred at 16 during the formation years of my life all the bad advice, bad instruction, bad support, bad participation and bad care doubled the time it took to get better. I'm lucky that i learned a few things about money on the way so that i could finally separate myself and isolate myself to allow my own body to correct itself.
This was putting letters to words, to sentences, formulating a simple explanation for the varied experiences we all have as TBI survivors. Brilliantly! Thank you very much and printing as well to share. Heart to Heart, Hand to Hand, Eye to Eye. Peace & Understanding be with ALL.
I have discovered and posted this to my daughter's FACEBOOK page who has TBI due to a near-fatal auto accident 12-29-10. I am her Legal Guardian and each day is a challenge and inspiration! My daughter was Head Triage Nurse for years before this accident and she observes that it is hard when you "know too much".
Very interesting to read so many of the statements I can relate with. It is a challenge everyday but with time things get better!!
I find it difficult to chat with people, I dont know. It is especially more difficult as I look normal, except I have alot of scars as a result of the RTA in which I got the ABI. It is difficult for me to try to overcome this obstacle, as I have no real support systems now!
tears rolling down my eyes as im reading this. It's like God answered my prayers. my family do not understand at all they do not even accept my TBI. I have had several explosive tempers with them when I try to explain to them and did not know how to put it in words. Thank you so very much for understanding.
In 1981, I was in a car crash, for thirty years i have lived with Frontal Lobe Damage. Until the internet came around I felt i lived in my own nightmare. So much more info on brain damage, especially Frontal lobe in the news these days. War, football, ... head injuries have brought the light to the world on what i struggled thru alone for too long. Excessive sleeping pills for years, none would shut my brain down, now hear that thoses sleeping pills prevent the brain from attempting to heal itself. I have taken Elival for sleep, depression, pain and ritalin for the daytime to keep me somewhat focused. so much to say on this subject.... been writing poetry for years and was a main therpy for me over the years.

Pages

Add new comment

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.