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

Hello, very helpful information not only for me but for my family & friends in my life. This way the things that are harder for me to explain can be defined or explained better for the person if they want to understand me. thank you.

Dear Nov. 3rd and anyone looking for a place to start for resources and support groups, most states have brain injury associations, call them.

Barbara

I have a TBI and it's hard to explain to someone that doesn't know how it effects u..it's real easy for me to lose temper I'm not as fun and happy as used to be its been 2 years and what I remember cause I have a lot of memory loss is that I was a go go go individual and I been trying to get back in the work field but I'm 43 now and since I was 15 I've done heavy construction and operated heavy machinery and it's all I know and remember but now it's to hard on my body and I don't trust myself around others on machinery..what are my choices? I guess is what I'm asking... because I need to work.

She shouldn't try to work until she is ready and when working won't make her injury worse, hopefully loved ones can step up and support until that time comes. You can't push a river. Never push too hard with brain injury

My daughter has TBI but is trying to find a job. Where does she go?

I am a TBI survivor, twice. I am 56 years old, the first was when I was 17 years old, the last was when I was 34 years old. I have struggled, for years, to explain to my family and friends how I feel, how I think, how I compensate for what they take for granted. I have never been able to put into words what you just did. It has caused a lot of hard feelings and misunderstandings. I am so very grateful to you for this information. It will make things so much easier for me now. I hope I can search further with you for anything else you have available. Thank you with all my heart. Please feel free to contact me if you have any questions.

I have the same problem. Thank you for letting me know I'm not alone. I sleep in hope I will feel better when I wake up but that doesn't last long before I become brain unaware again. I've always had it.

Five years ago I had a stroke, found out that I had a hole in my heart and I had actually had 8 tias (small strokes) and 1 real one, over my life time. They fixed the hole in my heart noted that I had lost the vision in the left of both of my eyes and had left sided weakness gave me some pamphlets and that was it. I had no rehab, nothing. I was a bright vibrant busy 34 single mum, studying a Bachelor of Design. My life as I knew it stopped I could no longer drive, I couldn't walk down the street on my own without looking at the ground, I had left sided weakness and when I got tired my left arm and leg were useless, all that is explained in this article was happening to me and I had no explanation for it. I fell through the cracks in my country's health service. I contacted the Blind Foundation and the Stroke Foundation and eventually after a year I had an OT and a Physio. Because I had struggled on and was stoic and stubborn I didn't need them for very long to help physically wise. I still suffer in all these ways described and I know that pretending nothing is wrong just takes years off my life thank you for this article it will help me to go easier on myself and it will help explain what its like for me to my family who basically think there is nothing wrong with me because they can't see it and they never saw me in hospital suffering!!!

This is all what I have and not many understand. It IS awful. I cannot even put words to it as you did. Thank you for being one who knows. Sorry you also have head injury. Its awful to deal with. Thank you for helping me not to be alone.

Hello all. Only reading the more recent post (had to stop due to flooding: symptom when your brain gets over loaded with emotion) it brings me back to the early days of my TBI. One rainy night changed me and my life forever. Cracking my head on the pavement after being mowed down by a car on my bike, and with everything that happened after I am a lucky man. It's been 13 years since that day and as much as I would like to say I've moved on with my life, it still haunts me and lingers inside the very depths of my being. Just today did I run into an old teacher of mine that I ran into prior to my accident. Seeing her reminded me how much I dreamed of my future and what I wanted for myself but what happened was completely different. Luckily I had my mother who did her best to get me into a TBI program and after being asked to leave that one, she helped me into another one. Awareness, probably the best thing that someone can ever achieve but when someone who doesn't realize that they lost so much becomes aware of what they have lost, it can consume them an as Andrew mentioned, suicide is a thought that may come up more than one an hour. There is much I can say but every brain injury is different. I was born with dyslexia. It was hard to grow up with the problems that came with that LD and then to have a TBI, just made the world a more unforgiving place to be apart of but I never gave up on life. Learned to live with the suffering of severe mindgrains (don't know how that's spelled), the change in weather, loud noise (I live in midtown Manhattan), vibrations, stress, and a few other things can aggravate my head and I'll be in pain for days. 10 years after the fact on the same day as that life changing day an hour apart I was in a head on collision. Remarkably I did not suffer another TBI (that I know of, because hitting your head after having a TBI can activate your problems all over again). My body was damaged severely and I now live with chronic pain not only in my mind and head but my body. I survived though, I am here to share with you all a piece of my life. I did not die and neither did YOU. You are here right now. Technology allows us to reach out and be heard and recognized. Stay in the moment, try new things within your comfort and once in a while try to do something new or different. Learn to enjoy the little things and love, love as much as you can. I know from experience some people loose empathy and others gain too much empathy. Life can be overwhelming without a TBI, with it it can be as if your mind body and soul have been torn apart, thrown into a bag, shaken and tossed randomly back together but your still alive, please take the time to put the pieces back together. Respect yourself even if people don't know how to respect you and remember there is plenty of us out there here and somewhere else just like us suffering. What we lost can be hard but there is more to gain always. Hopefully you learn to appreciate the suffering to find the hope that one day that all the suffering will turn into pure happiness. This is one way to look at life, I know you can find your positive outlook as I have. Apologies for the long story. It was therapeutic for me, thank you all. Love Clark

Exactly what I needed to read right now. Feeling misunderstood.

My spouse is 8 years post stroke. Married 35 years with 2 grown children Oh my goodness. How overwhelming just to read all the comments that I totally can relate too. A women with young children and a baby on the way. How very difficult.  After visiting with grandchildren Bob is so wore out and can take a day to recuperate. Taking  time out for him to have a place to sit back in a dark room helps him. He starts his day the same way. he will sit in his easy chair in his bedroom sipping coffee for at least a couple of hrs in complete darkness and no sound. No seizures anymore but extreme anxiety. Bless you all.

Great article and comments!  I can relate to many of them.  I acquired a severe traumatic brain injury in 2004 from a car accident.  At that time I had 4 young children (6 months, 5, 10 and 11), a new husband, a whole new life in a different state when it suddenly spiraled completely out of control.  It's taken me almost 13 years but I've learned through trial and error how to bounce back and achieve success.  I'm walking with a cane and learning to walk alone after having to use mostly a wheelchair since the accident.  Recovery CAN and does happen well after the initial one to two years.  Learn from my mistake.  Believe in yourself and NEVER GIVE UP!!

Yes! Especially the extra noise. I can't filter it anymore. Nor can I determine the difference between real questions and rhetorical ones. Don't assume we are a-ok although we would love to be.

I ended up with some aphasia and when tired I need help remembering words. My granddaughter helps me and tells people she can speak "grandma".

I lost my job of 24 yrs because of my "health.' I think that's crazy after all I gave them over the years! Anyway, I am not the same anymore. All I did was fall and split my head open and had 12 staples to close the wound. After that I truly thought I would be fine. I'm such a hardheaded woman! This was 4 months ago and I live with headaches, nausea, and vomiting and the worst is my balance and that is why I was let go from job  I became a liability. As much as I love the owner of the restaurant that I worked at ..my lawyer is considering a second lawsuit!

I am a mom fighting the fight for a son but a little late to this party. My son (now 22) had more than a handful of concussions as a child - all mild. We just didn't know. Signs of their effects were so subtle we missed them over the years. Only smarter now because we are now caregivers to a shaken baby survivor. Unfortunately, smarter too late to save him from drug abuse, which will soon land him in jail. Looking back it is so clear... the slow detachment from enjoyable things, the smiles that came less and less. A detachment disorder from himself also followed, where he said he felt like he was not experiencing things first hand but as an observer. Lack of emotion. One major surgery during this time pushed him over the edge. Brain injuries and opiates does not equal forward motion. When you are faced with brain injuries and drug abuse you struggle to know which approach will help more.  You always hear "do not enable", but how can that apply when there is a brain injury present? I don't want to use any of this as excuses but just to better understand what landed us here in this painful journey. He lost himself so young. He will need to fight for himself. I pray he remembers how.

Understand your TBI, nourish your brain, and work it. As brain surgeries evolve many are lost with the daunting task of recovery. It's a holistic approach your entire body needs .

To all of my loved ones: please, please let me sleep. I have to sleep as much as possible.

so very clearly describes issues since my injury over 20 years ago. I do very well, but when I don't I REALLY don't. I (through some ironic and well timed opportunity), have been working full time, but it is so very overwhelming and when I get pushed to the limit, things crumble. I am alone and it is a terrible feeling to feel like you are not able to handle your life. If works is going well, my life isn't. I wish I knew of an ap for this.. but the article...these descritptions...they help. At least I know I am not loosing my mind and that I am not actually alone. That is something

Wow this is....exactly what I'm feeling and I think I need to show this to people. I want to stop having this happen though it's unbearable.

I had a severe TBI post 30 years. Still right side weakness, leg and arm. Migraines and seizure disorder.  As most here seem to know, I look so normal that most people don't understand that I am not and I experience most of what this article describes.  Family does not understand, things like I drive an extra 5 miles to go to a store that has no one in it, so I can shop for food.  If it gets crowded, I can't be there and I leave.  In recent years it seems and this new, that I can get angry easily for no apparent reason so I sought out counseling with a specialist who knows brain injuries and long term effects.  I get up every morning and try to keep a positive attitude towards life and towards each day as each day comes, even though I know my brain seems to be deteriorating so many years after the injury.

It has been five years since my accident. What an excellent description. This sounds like me explaining how I feel. Hard to believe it's someone else's words.

This article is exactly what I've been going through for five years. I will put this into the hands of my family and friends because it explains things better than I ever could. I have leukemia and had to have chemo and I have never recovered full brain function since. I am unable to work because of it. I am thankful for the article and describing what I go through everyday.

FINALLY someone gets it! Now if we could just get people around us educated. Love that you have stated me so well. Thank You!

I have been off drugs and alcohol for many years, yet my family members still accuse me of being on drugs, I suffer from brain damage, which in turn allows my brain to slow down and my speech to become slurred. Some times my brain doesn't allow my thinking to become understanding to others. Because I am an x drug user, some times being called a drug addict, brings back memories of when I use to use. And Temp's me to use again. I would expect more from my family for moral support, than to keep being accused or asked am I on drugs. It is no help to have old memories shoved in my face from who I use to be. Yes, I used drugs and drank more than five years ago. If you really want to support me, you should pick up the phone and tell me you love me and are there for me. You should also know that slurred speech come from not just medication, but brain damage. Support is not to belittle or to shove an ex drug addict's addiction from their past life up again. It is a proven fact, the fastest to make an ex addict relapse again, is throwing their old drug habits back at them. It is also a fact, that when people or family member do so, most addict members commit suicide because they feel a sense of worthless and do not believe they are somebody or even loved by anybody.

I Had Brain surgery in 2012 and although the surgery and recovery seemed to go very well. I have noticed major differences in my thought process and my temperament. I don't tell anyone how I feel but I struggle daily just to stay on track with my thoughts and my work, my life etc. I have always pushed myself to get through the worst of things. I can't say I had the support I needed during my recovery and I think that may be partially to blame for the issues I am having now. I have read that stress and trauma can effect the way your brain recovers, It is 2016 and I am still trying to get back to normal.

Hi there i am a brain injury survivor. I had a cerebral hemorrhage 7 years ago this month. I was in a coma for 6 weeks. 2 of them drug induced because I crashed when they tried to wake me. I had 30% chance of recovery and my left side stopped working all together. I am posting this just to show there is hope. I am now back at work full time. Still have left sided weakness, but I am alive! I am not the same person I was before my brain injury but i am getting there. Thanks to Kings College Hospital in London and Neuro rehab in Canterbury Hospital. I hope this helps someone out there to not give up. Mandy

Seven years ago I suffered an incident. This is the best description I have ever seen. Boy I wish I had this all along, written on every wall in my home.

Great article!  Shows the human side, rather than just focusing on the clinical side of this.  And at the same time, it informs the rest of us how it feels to go through the huge life changes that you face after TBI.

I can relate to what you're saying, because I face similar things, for a different reason... As a person who lives with the challenges that MS presents, I go through some of the same things that you mention.  I also know how hard it can be to explain it to someone who hasn't lived it, and has a hard time understanding how overwhelming it can be at times.

But take heart!  The more you work with a challenge, the less challenging it is.  And people around you will finally get it, and will be there for you.  One thing I learned from my experience is that it helps to take it one day at a time.  Sometimes it will be an hour, or a minute, or even a second at a time.  And that's ok; the important thing is to never give up. <3

This information fits my NMO issues 100%. Demylenation of the nerves in the brain n spinal cord.

Hang in there and support groups may help. As long as they are not pity parties.

I was brought to tears reading this. My mother suffered a brain injury back in 2000. I feel like such a jerk after reading this because, I know I've had unreasonable expectations. She was super mom once upon a time, juggling a job, kids, ball practice, cooking, and cleaning. I've been so selfish and unreasonable. She too gets angry when plans change or something is sprung on her. She often blows up and says extremely harsh things or acts out. Thank you so much...I needed this.

I am a 17 year survivor.  To look at me you would never know that I was in a coma for at least 3 days with a coma score of 3.   The only scars I have from the car accident are the ones I hide with my hair.  Therapist's prognosis was grim at the time of the accident, however I overcame many of the obstacles that they predicted I would have.  I returned to my life in 4 weeks and have been teaching ever since.

I have many lasting symptoms of TBI, but because my parents believed I had a full recovery, I discounted what I felt.  I forget names of my students and co workers.  I can not call words fluently.  Movies and books are no longer enjoyable because I don't remember them.  

It all came to a devastating blow when I hurt my Best Friend.  We had plans to spend time together.  She had to change the plans.  The change sent me into orbit.  I could not handle the change in plans and I was mean to her because of it.  I hurt someone that I love.  Spontaneity is so hard for me.  Change is hard for me.  I get mad so easily.  I say things I don't mean and find myself apologizing often.

I really think that I have a problem.  I have considered going to a support group.  Has anyone done this?  Would I fit in?  Would it help?  I am devastated and I think I need help.

This so true! A person can be in a total overload! And no one can see it! Except the person that is suffering! Sometimes a person can't stand the loudness of two or three people talking at once ! Or screaming! Or just someone not getting what the person that has the problem, is trying to say! So the person that needs your help just gets louder! Because they are trying to tell you something that will help them! And no one will lesson to that person! So it causes the patient to get hyper and overload! Which causes them to get nervous and disoriented! So that is not a healthy circumstance for the person that needs peace and quiet time!

I have not had brain surgery! But I am having issues with my brain wanting to work right! So I have been forgetful and wonder what I did with something! Or I just really have to think hard to remember! I am 71 years of age and this has came on me fast! I am seeing my Neurologist! And he is trying to help me! And sometimes I have to really think hard about things! I juts guess this is the new me! We shall find out soon! God bless all of you!! Delois

Thanks for sharing Andrew! Many times I feel like loosing my mind 😩 It may be too soon for me to be "normal", 6 weeks after brain tumor removal (endonasal). I look good outside 😜 But the head is messy lol All the best for you! Lee

I am posting this on hopes it helps someone see than light at the end of the tunnel. I was a boxer and a graduate student in a very competitive program when I had the head injury that was the straw that broke the camels back. It was a mild tbi, with a loss of consciousness. I was completely incapacitated for 6 months....then things started to get better. I am 1 year out and still have headaches, brain fatigue, anxiety, sensitivity to medications and changes in altitude or just everyday changes that normal people can handle, noise crowds and light bother me. However.....life is so much more manageable. I am feeling like i can start to see the light at the end of the tunnel. I scoured the web to see.."how long will this last?" and unfortunately it is much different for everyone but generally for a mild to moderate tbi symptoms start to get better after 1 year. :) lots of omega 3s and 6s (buy high-quality) , magnesium, good sleep schedule, NO SUBSTANCES (alcohol , mood altering drugs), and oddly enough, blackstrap mollasses, have helped tremendously. You may feel a lack of motivation and feel "lazy" let your teachers or co-workers/bosses know what has happened and that You Are recovering and intend to do your best to remain as productive as possible during recovery and they will hopefully approach the situation with a compassionate and understanding heart. I feel most fatigued when I am productive and working all day...but ironically at this stage I feel best when I force myself to work and do my studies as I feel most normal during these times even if it exacerbates those symptoms. Sometimes just getting through a work day helps me understand that I can function. Try to get out into the world for fun but give yourself a way out. Stick in social situations when you get those nasty symptoms as this will help your body learn coping mechanisms. I have been fortunate enough to learn these mechanisms and get well enough at the same time to be able to participate in these fun times again. Finally and most important .....EXERCISE. Exercise exacerbated my symptoms initially but research has shown that it reduces symptom timeframe as well as helps your carotid bodies regulate and manage blood flow to the brain better so you get less headaches and those weird out of body experiences when doing everyday activities. Many facilities Are running research studies that will let you participate in novel treatments for free. Craigs hospital in denver runs these. A simple google sesrch for this may change your life . with that i will stop rambling. Remember to love each other and yourself. Suicide is A fleeting thought and will pass with time. Find meaning in suffering. And learn to love the little battles won! Andrew

I believe these testimonies aught to be documented and be placed into the hands of every teacher/professor in the medical field, as well as into the hands of every practicing doctor/health care directive on the face of the earth. They need to know this.

This is like looking into my own soul.  I have thought probably every line of this article.  The words for me are lost at times.  I am often accused of being rude or mean sounding, even scary.  It is very difficult to explain to anyone what you are feeling and I too will be printing this out and let my family and people I interact with read it.

Long road for all.  I wish you all the best.  I am on year 3 of my tbi sustained from a car accident.

So glad I saw this post!! It's been 2 1/2 years since my accident and I still get frustrated trying to explain these things to people. This is a good way to show people what we go through and how we are trying to cope. I think the worst thing I hear from people is, You still are not back to work? Why, you look fine and you seem like your normal self?!? With the struggles pointed out here, are the main reasons I cannot do my job as dental assistant. But I am coping with what I have and take everyday as a new day and new achievements! Most of all it is good to have such a great family support (cheerleaders) in my corner who don't allow me to give up! Thanks again for this !

Thank you so much for taking everything I feel and do and putting into words that my friends and family can understand. Sending good thoughts and hope for a progressive recovery.

This is a amazing story and absolutely true. I had an Cerebral AVM removed from my Right Frontal lobe in January 2016. Since I can remember I had suffered from really bad headaches and chronic tiredness. After the surgery both has improved but now almost 5 month later - I am NOT feeling myself. Everything written here is so true and people, loved ones and family don't really understand the seriousness of the matter. Even at work, I just keep to myself and to what needs to be done. I am taking everything slowly and that is frustrating to myself. BUT I know that my brain is recovering and healing on it's own time. No need to rush! I'm still alive and have SO MUCH too be thankful for!!

Thank you. I have a Tbi from car accident two and a half years ago. My physical injuries are bad but not as bad as losing long time friends who say things like "you need to move on" and "you're fine). Absolutely no one understands me I'm on an island which is gradually shrinking

I am so happy I read your post..my 28 year old son had a stroke and brain bleed he had surgery and an AVM Removed from his brain..June 13 2015...what you wrote will help me to understand him much better...he is a single father with custody of his two children. ..He struggles so much since he can't read or write. ..and he wears out real easy...Now I understand him more...thanks

Thank you very much for your article.  Reading this has made me feel "normal"  in my world.   I am a survivor of ABI through surgery and concussions for over 25 years.  Wish more people had an opportunity to learn about associating with people like myself.  Thank you again.

I have been suffering from tbi since I was 2 and I am almost 40 now, it affects not just myself but my partner as well, even I admit I have some of the worst memory I have even heard about, a good example is my old work, I was there for over 4 years as a store manager at a pizza shop and to this day I can only make 3 by memory out of roughly 36 pizza's, Like a lot of people in my situation I worked around my problem but it's now to a point that it's out of control, after reading a few stories on here it's given me hope again and will seek further medical advice.

just know that my prayers are with everyone that has tbi I know the feeling I wrecked my truck and when the EMS found me I was fifteen ft from my truck i had brain surgery when I got to ER I was in ICU for two months I'm getting to go back to my job but every day is tough in many ways. If you're struggling with tbi then my thoughts and prayers are with you

Thank you to the group for putting together this list because this explains everything that I am feeling and going through that I couldn't put into words so my family and friends can understand what I'm going through. bless you all

This is my second comment only because I feel like I could meet you and relate to everything you have and are currently suffering from, because I could place myself in your place for each action and then wonder WHY? Sooo I quit wondering why and worked on acceptance of which I fight with each and every day, I PRAY A LOT if it wasn't for my spirituality my spirit would be broken and healing wouldn't be part of the process!

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