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. 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 (733)

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.

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~

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!

Thank you. For validating what I have been enduring alone.

You are not alone Jennifer.

I understand better what you go through from reading this article. So very helpful to people with brain injury and their peers.

Almost 4 years ago, I was in a car accident that caused severe TBI. That is brain injury. It was tough for me at first but now I don’t have any of those issues it causes. My memory now is great. I am really organized with most things in my life. Examples would be of my car. I keep up on all maintenance needed and keep it clean. My house, my bedroom, I always keep both of them clean and organized. I don’t feel confused about things. If I am doing something, I stay focused on it. I’m a type 1 diabetic and my A1C is perfect. From a blood test, cholesterol is good, blood pressure perfect, no problems at all with my kidneys. I don’t feel that depressed feeling. The reason why is I battle through all of this to achieve great health and life.

Great article!! Says everything !

I was in a near fatal car accident when I was 17. Was ejected from the vehicle, and sustained multiple injuries. Punctured both lungs, broke 6 ribs, had my left ear cut off, torn acl in right knee, and parietal skull fracture with large amounts of brain swelling. When I awoke I didn't remember a thing. Not even who I was. For months following, I suffered several memory lapses, severe headaches, and nausea. I recieved a diagnosis known as dyspraxia. Basically my brain runs like a 96 escort. Itll get the job done, but its gonna chug and putt the whole way there. The accident was when I was 17. Now I'm 30. I still have issues with mood swings, short term memory loss, brain fatigue, being easily overwhelmed and over anxious. Planning is a big struggle of mine as well as originality. It's especially hard for me to think on my feet if you will. I need constant cues of reference. If you asked me what my favorite movie was, I would stare blankly. I would need you to give me a list and I could tell you which I favored more. Often times I research into arrested development, thinking perhaps it fit my circumstance. At times I feel stuck at 17 with all the responsibilities of being 30.

Sometimes I feel stuck at 12 and I am 40. That was my TBI. I can relate to what you are saying.
At 39 I sustained a mTBI from a car accident and I have been reliving a lot of symptoms from my teen years that I didn't realize were from the TBI. I did not have the best follow up care at 12.

You are not alone I feel like a teenager or a toddler sometimes on my best days....TBIs do that to you. Sadly, so many of us do Not get the care we need. Keep going forward you are a warrior, a survivor and a champion...remember that

Thanks man, that’s a great description (and the 96 escort gag made me laugh:)

I am 76, and was in a car accident at the age of 23 before there were CT scans or MRI's. I was unconscious three days, out of work six weeks, and went back to my same job in a laboratory. I had a skull fracture, concussions in the front, broke many teeth and survived with no surgery. The attending physician told me when I was conscious that I was lucky because I had my "block knocked off", meaning my skull was off my spine if I understood him correctly. I'm certainly not clear on what I felt like during that recovery time, but remember getting a great deal of sleep every day for six weeks. It wasn't until this year when I had a CT and MRI in search of a diagnosis of what a neurologist said were two possible seizure episodes. He was shocked at what my brain looked like as was the doctor where I was hospitalized. My frontal lobes locked destroyed. I had lost my sense of smell completely for seven years, and now it comes and goes with mostly minimal ability to smell things. But I can't say I understand what else it meant because my IQ was "very superior" and my memory was tested to be 2.5 standard deviations above the mean around age 60 when I was worried about my mind losing its abilities to comprehend. The worried well. I don't recall symptoms, but that may be a memory problem that was happening at the time,...just a mystery to me. The neurologist told me this year that I was extremely lucky that I have had no symptoms up until now. The CT scared me. My brain is acting differently now. I'm beginning to feel things going differently. It is hard to put into words. So I'm waiting. I guess I will just hit the veggies and fruits and legumes hoping for the best. The prognosis for people with TBI is one that is too often a future with dementia. But being 76 means I did well. Shouldn't complain about that.

Yours is an amazing story, Carol. It seems your life following the TBI was truly miraculous. I hear that things are changing in your brain function now. That must be scary regardless of how fortunate you have been. Please know that my thoughts and prayers are with you.

And please people realize I need stability and order around me at home ..please quit changing things around that I have grown accustomed to. It is very frustrating

Yes I agree and it's basic respect for others as I was taught but it is ignored and I often wonder how blind or vision impaired people learn to accommodate and tedious detailed repetitive steps that is tiresome to me as TBI PATIENT and domestic violence survivor that is not supported, represented, or advocated as worthy individual that has learned more skills and adapted to deal with matters positively and with success and regain quality of life as individuals that is equally valued in community and roles of intelligence is recognized and prior credentials and education are basic qualifications required to be professional and expert qualified for job and classified as professional status.

However in area I live and have no positive outcome or supportive GROUps that recognize TBI patients as equal persons who are worthy or needing assistance but it's rudeness of the south as its current situation and courtesy and basic respect if others are vanishing completely as general behavior and it's simple to nor move others things and inside their environment and chairs and tables are not kept where they were placed and it's cruel and it should be labeled as it is. But if I was to move entire home around that wasn't mine it be acknowledged as awful behavior of my person and as my disability made it unpleasant experience and I not got anything except more issues and tasks but I know they get moved by others constantly also. Thanks for your attention and please be aware of respecting and leaving stuff alone that isn't yours or an if your business.

I'm glad that I've found this website and particularly this article.

I suffered a large right-hemisphere subdural hematoma as the result of an assault. Fortunately, I was in Trauma ICU when a series of seizures landed, and a neurosurgeon was on-site. A prompt craniotomy probably saved my life. If I was elsewhere at the time, the outcome might've been really bleak.

It's been six weeks since the injury, and I notice changes that frustrate me but others either shrug off as me having an "off day" or might be too polite to point out. For example, my short-term memory has always been hit-or-miss but now it's worse than ever and impedes basic daily functioning. I also have language difficulty that I didn't have before. I've trouble gathering thoughts and communicating in a linear, cohesive fashion.

I hope with time and practice this will improve. Another oddity is a pervasive knocking sound, it's like a tiny carpenter inside my skull busy building furniture. It does coordinate with my pulse, and I mostly hear it while lying down. I wonder why this happens and if it will stop.

I appreciate this article because I can share it with people and it will be able to explain some of the things I'm experiencing.

heya Amanda, that knocking sound with your pulse sounds like pulsatile tinnitus. i'm so sorry to hear you were assaulted. wishing you the best in your recovery. :-)

It has only been six weeks and you're doing great. All you have mentioned does happen after a TBI. Your journey has just begun. I have faith you will do well in your journey⚓

Let me start off by saying that these are very helpful to family & friends overall in understanding me and TBI .

My story is back in 2014 I went in for a DR visit for an upcoming neck surgery to fix a C5/6 herniated disc . A better MRI was needed before the operation could be performed. In having the better MRI done , a golf ball size brain tumor (on the lower back of my head and upper spinal chord) was discovered. Fortunately the tumor was non-cancerous but appeared to be there awhile. In removing 80% of it due to it being attached to my spinal chord and wrapped around my jugular vein, (per the Neurosurgeon) the other 20% was determined to be too dangerous to remove and left alone. After the surgery was complete( which took shy of 13 hours) I was left with my Cranial Nerves 7- 12 either destroyed and/or damaged. I lost the ability to walk , stand , swallow/eat/drink (A Peg tube was put in for all intake and nourishment purposes), hear (right side only) write (again right side), speak clearly and without difficulty. A weight was also put in my (right side) eyelid to help it close shut, being it no longer shut all the way on its own. A lot has happened since 2014 to now , many surgeries and procedures to list have happened. I now can only walk/stand with help and at a very short distance when I do walk. I can swallow just a little bit due to a special surgery performed at UCLA. I have lost complete sight on my right eye, but have gained about 20% of my hearing back. Everyday is a struggle of some sort , with old & new ailments ,but as stated above , some days are better than others .I take it one day at a time but have the love of family & friends......For that I am thankful !

As a guy who used to have a craniopharingyoma, I understand -(albeit unfortunatley)- pretty much everything you're going through. I'll support you all, even in death.

In my prayers,

-E.G.

Wow I was amazed this is the true fact of what I experience on a daily basis , Thank you

Thank you everything you say is happening to me finally someone else knows what is happening to me

I am using CBD from Fat Pig Society in Ft. Collins CO for pain. I use 1/4 teaspoon three times a day and it has helped me become "normal" with no pain for weeks at a time. The guy who hit me never looked up from his phone. My life changed in an instant and his went on. I had tried CBD from other places and it made the headaches worse.

Thank you for defining this for my family in this simple format. I'm forwarding it to my daughter and friends who want to support me but still think the old Val is coming back.

Thank you for articulating these symptoms so clearly. I suffer from the effects of a closed traumatic brain injury as well. I endorse everything you wrote however I would like to add one more fallout symptom. I am measurably more frustrated with even the littlest issue, much more so than before my injury.
Thank you again for this well written piece.

Thank you so much for your input. In addition to the above article, this is exactly what now happens to me now since my closed head injury and skull fracture 6 years ago. This is a great article that describes how, what and why to everyone and provides so much truth to what is really happening to a brain injury survivor. Take care, stay safe and God bless to everyone!

well written and helpful to us survivors to show friends and family for them to better understand. thank you

I was in an accident in 2006. I was diagnosed with a TBI. I had a brain bleed in the right frontal lobe. I had just about every symptom that I’ve read about. The doctors said that I would need help the rest of my life and to kiss my old self goodbye. I was actually given a book and told that the old me was dead so I should get used to the new me. I told them God is bigger than brain damage. After 3 1/2 years I was somewhat better, that’s when the doctors all said there wasn’t really any more improvement I could expect. I had slurred speech and visible tremors among many other symptoms. I was not in a good place. I decided to go to a hyperbaric chamber. The doctors laughed and said go ahead if you want to waste the money. I went for two dives a day, six days a week for a month. I popped back into myself two weeks later. That’s the only way I can explain it is that I felt like me again. I had to catch up with time again and that was hard to do because no one understood. Most of the 3 1/2 years is a blur, but I remember some of it. I was pretty much back to my normal, not experiencing any of the symptoms that I had. I was driving, going to the grocery store, basically doing everything I did before the accident, without any problems including my memory. After several months I got sick with congestion and my homeopathics weren’t knocking it out so against my better judgement I went to a clinic with a regular doctor. I explained that I had previously had a brain injury and that I was better after going to a hyperbaric chamber but he chuckled like he didn’t believe me and handed me a prescription. I had it filled and took one tablet. That night it felt like I got shot in the head. I had a relapse and it lasted about 6 months. By this time our insurance had long dropped us because of the cost so we had been paying everything out of pocket and I couldn’t go back to the hyperbaric chamber because of the expense so I’ve been doing the recovery on my own without doctors. I figure they didn’t help the first time so I don’t think they’ll do much good now. I have recovered mostly. I have a problem with time management and I have some short term memory issues but I function pretty good. I can’t draw as well as I used to but I’m working on it. I stay positive because I believe I’ll get back to the full me again. I do get fatigued when I do too much for to long and too much stress brings on brain fog. Regular exercise helps in so many ways for me. I would recommend going to a hyperbaric chamber simply because of how much it helped me. It may not help everyone but it may help some. I would suggest researching them because they are not all alike. I would encourage anyone who reads this that there is hope for recovery. Be patient with yourself and be kind to yourself. I am so amazed at how our brains can go through so much. I remember when I couldn’t comprehend what was being said to me. I have come such a long way and I will not quit on myself. What I have learned is that we are capable of relearning we just can’t give up on ourselves even if others do. There was a time during the recovery process when I was very hard on myself. I was always a very independent person. For me, my faith helped me go through everything and it’s still helping. That and my incredibly patient husband. Be encouraged there is always hope.

Thank you and needed to hear your story. I suffered TBI a few times very bad one in 1977 and 2006 they were amazed how I made the progress I did and came out of it alive - but my dear husband tried to help but didn't understand and that's okay but my faith has I believe given me a strong attitude not to give up since my actually 4 TBI's another one in 2003 when my dog pulled a 50 lb computer down on my head splitting the back opened and stitched but was told had a narrowing of the canal to me meant nothing but now this year with stress and high BP and cholesterol was the big part of that narrowing canal I have now found what it is - I suffered a major stroke and the Carotid Artery is blocked so now know what they meant narrowing. Also suffer with Temporal Artritis and still have to be very careful as get TIA's and left a high risk for another stroke. But it is so amazing when read everyone's posts and how far we do or can come - as I do get slurred speech time to time if tired, get frustrated not able to do or want to do what once took for granted. But all and all I think my memory is pretty good as my husband will say bless you as God has but yes do I live in fear of Dementia of course do I do research on it yes as I think it's only normal to recognize the signs. But have also found our complex brains can have that gene as early as the age of 12 and carry it not showing up for years later. Am I going to worry now NO but live every minute every hour in peace, love and with happiness. And just hope other's can understand or learn TBI's or the after affect of a major stroke. God bless to all.

You have inspired me ..l didnt have an accident onlyban aneurysm andcan 8 hour operation to clip it .l feel a bit messed up in my head ,vunerable ,messing up words feeling confused but just damn grateful im alive but what you have been through is admirable ..WHAT A CHALLENGE ..WELL DONE .XX

I also had an aneurism clipped but unfortunately, blood was left at the site , which damaged right side of brain with stroke-like symptoms. I had no voluntary movement on my left side and through physio was able to train left brain to operate left side. I had to re-learn how to walk, talk and focus. The best thing I was taught was to recognize small victories and celebrate them in my own way..a dish of ice cream, staying in my pjs..etc.
I have survived for almost 18 years and although I know my limitations, they are not obvious to others. I still play computer games, especially word types as suggested to maintain/ enrich my vocabulary and do my own aquafit exercises with water
weights several times a week. Don't give up..it takes time but you do get better..

Hi Robyne-
I have some questions as to how bad your first year of the recovery was from your accident. My dad had a really bad accident and has TBI. I would like to compare his recovery to someone else who has had something similar happen.

I had TBI July 17th told my trauma ctr 3-4 months, I was just told in rehab it's going to take 2 yrs. I was given a neuropsych evaluation it let me and therapist know exactly where I was struggling so I could focus on those areas. I'm not myself any more my thinking and emotions are very different.

Hi Alexandria, I’m sorry I’ve taken so long to respond. The holidays had my attention so I haven’t checked back with this site until today. The first year of recovery was very slow and as I said a blur. I remember the first six months I only sat and stared mostly. I couldn’t comprehend anything. I could see when someone was talking to me but it took several times repeating before I understood. I could see boxes in my head, some with words, some with pictures but nothing was connecting. My emotions were gone. My peripheral vision was gone. I saw silver/ white flashes. It was like looking through a tunnel. My hearing was really messed up... sound was amplified and even slight noises hurt. My speech was slurred and inconsistent. When I tried to walk, I couldn’t go any further than a few feet before I was on the ground. The dizziness was unbearable and the spinning wouldn’t stop. I had a really bad and constant headache. My sleep pattern was messed up... I couldn’t sleep and then when I finally did manage to fall asleep it was for only very short periods of time. I have glimpses of that first year but most of it is just gone. I will answer any questions the best that I can. Recovery is slow but possible. There is always hope.

Thank you finally someone gets it

Pages