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 (669)

I am so sorry for what you guys have to go through my heart breaks when i read these stories 

From a 13 year old kid

My husband and I were married for 4 months when he had an automobile accident that he was not suppose to survive, but he did. He had numerous injuries but the worst of all was a frontal brain injury. I have been an operating room nurse for 19 years, nothing prepared me for what my children and myself have been through in the last 8 months. We are existing not living!! Walking on eggshells and his reality isn't our reality. He is mean, selfish and the most arrogant man I have ever met. I keep praying everyday that my "other husband " will return. Well that hasn't happen and I am not sure how much more I will be able to take. I love this man with all my heart but loving him that much isn't going to change the situation. He has severed all ties with friends and family and no one wants to be around him including me. I feel the whole situation stinks and just pray that it will get better or pray that I have the strength to walk away.

Thank you  for the information.  We're just starting this journey with our 19 yr old daughter.  She was in a car accident on Oct.22,2015  & received a concussion with loss of consciousness. She is so frustrated with how slowly she is recovering.  She is dealing with short term memory loss & headaches.  She forgets to eat & it's harder for her to put things in a timeline. Like what day she did something, she gets mixed up & thinks she just did it & it was several days ago. All these articles are helping me to understand her battle a lot better & some solutions to some of her challenges.

So I was struck by a car while on my skateboard about 6 months ago. I fractured my ribs, jaw, knee, shoulder blade and suffered a TBI. What bothers me the most is the aftermath of the accident. People just don't understand you. They think you are the same person. They don't realize that your whole life changed. I recently have fought multiple friends. It's just a tragedy. I can't make anyone understand my disability. It's a tough life for all TBI survivors.

That was the perfect definition of a head injury with brain being in a cast.

I'm retired army vet from no seat belt riding with friends after getting off work in 1993 now with recent surgery getting baclofen pump in will hopefully answer my prayers getting out of my wheel chair.

So like some people never even knowing that I even have a TBI unless I told them.

Please stay in  touch like to get to know some more about you

Jermaine

Thank you. I was feeling lost and thinking I am getting worse. It is great that someone understands. This help me get thru this frustration.

I survived an attack by a gang ...trying to prevent a lady , who had her children with her, from being assaulted... During the attack I was knocked unconscious several times... And my head kicked and stamped upon... Since these injuries I have often blacked out..sometimes for days... People don't realise how difficult normal tasks become..when you can not concentrate on anything for very long... I myself have gone from very out going to pretty much a recluse... All confidence had left me...was limited in vocabulary..reading and writing.. And 15 years later I still struggle with so many things... Relationships , friendships became almost impossible to maintain... The thought process changes so drastically, behaviour patterns also become uncharacteristic... Mood swings... On top of the world and in a moment , down into depression.. I have recently entered into a very loving relationship, with an incredibly patient and easy going lady... The time zone and distance in Miles, do not trouble me... Each day though I battle to feel worthy of such love... And work hard now to recognise the symptoms and effects , these injuries have made.. In May of 2016 we hope that this beautiful lady will be able to visit me in the UK... With her help I have come so much further forward , than I thought possible... To help in the healing process I am looking for a documentary , on the effects of head injuries and relationships, that we can watch , that will help both of us come to a better understanding of the difficulties caused... Thank you Brighteyes.. You relit the flame ,that had just about been extinguished...

I came across this by chance. It sums up what I'm trying to explain to people. I also have to remind myself that this is all new to them. I'm just two yrs in and looking for someone to manage my money. I keep getting ripped off.

~~This is such a great article, thank you very much for posting it. I'm 20 years from my last concussion, 30 from my first (and by far the worst). I've never known that other people feel this way too. I always thought, and have been told, that I'm just an emotional person and that I need to control them better. And while I have attributed certain symptoms (like exceptionally poor long-term memory and exceptionally good short-term) as being effects from multiple concussions, there are other symptoms that I never knew about mainly because it is very difficult to recognize them in yourself.
For instance, the reason I am here and looking at these articles is because I recently had an issue with dealing with anger. I went to a late movie with my family and my step-son met his girlfriend there. When it was time to leave, he was taking his time coming out of the theater, talking to his girlfriend and just being a normal 15-year-old. My wife and I were tired and ready to go home. I got unreasonably frustrated saying things like “We’re not his fucking limo service” and like what he was doing was at the highest levels of disrespect. I was out-of-line and my response was way too severe for the situation. And there are numerous times throughout the past couple decades that are similar for me. I remember them all and still feel horrible and embarrassed about each one.
But what was weird was that I had no idea at the time that I was doing anything wrong. I felt that I had every right to be frustrated and I had every right to stand up for myself. It wasn’t until my wife talked to me about that night in the theater that I realized just how inappropriate my response was, and even then I fought it a bit. Prior to this one instance, if anyone would confront me about my response, I would justify why they were being over-sensitive or looking out for their own best interests, or just unwilling to accept responsibility. But when I looked back at my reaction and placed myself in my family’s shoes, I was once again horrified and terribly embarrassed about how I acted. And I know that years from now, I will just think of that one moment (another to add to the collection) and feel bad about myself.
I am very appreciative of this article and there are so many friends and loved one that I no longer have any sort of relationship with because I have either alienated myself from them so they don’t have to deal with my shit or they have distanced themselves on their own. I understand that I will unfortunately not get those relationships back, but hopefully I can now explain this to new friends if I start acting weird. It doesn’t mean they won’t distance themselves, but it is still at least better than them thinking I’m just a total asshole. Or maybe I am, who knows.
 

I am a 5+ years survivor of tbi...i was raped and beaten badly...during the attack i was kicked in the head with a steel toed boots...it cause serve damage to my brain and other serve health issues...my tbi went undiagnosed while the doctors were focused on my other health issues...after moving to texas i was diagnosed with tbi and started treatments...after a surprise pregnancy i had to stop taking my medications and treatments...i lost my daughter at 24 weeks of pregnancy and my health issues had worsened...i started to have extreme seizures...2 years ago this month i suffered a stroke and was put in a medically induced coma for weeks...during this time i was transferred to at private hospital in mexico to undergo stem cell treatments...i have been here almost 2 years now and i have suffered many setbacks...seizures and brain surgeries...i have a whole new team of doctors and i am finally finding the hope i have been missing...i am getting better and the stem cell treatment is working...my brain cells are coming back and i am starting to be able to do more...there is still alot i cant do for myself and i get easily frustrated...i have lost some many people in my life because of them not wanting to deal with any of this...i feel so alone most of the time...my biggest issues right now is i am so very much in love with a man and he isn't understanding why i can do certain things but not others...i cant hold my cell phone but i can hold bigger things...he is not understanding that i cant grip smaller objects and i can only hold the larger object for afew seconds at best...i am working hard on this...but i am afraid of losing him because of this...any advice anyone can give me is greatly needed..thank u

Love this! It has been 16 yrs since my injury and took years to allow myself to accept that it's ok to sleep more, go somewhere quiet or just observe rather than try and follow multiple conversations. Never give up! Allow your body to rest and do the best you can do. It's more than most will ever try to understand.

Hi All Thanks so much for sharing circumstances and stories alike. Atleast now I know that I am not the only one and that I am not crazy or going through stuff that makes me seem like I am a crazy person. This really brought things into clearer perception. I suffered TBI through a car accident whereby I was a passenger just going along with my cousin as he just got a new car. Little did I know that... that ride in the car would change the rest of my life . I don't know the exact happenings of that night and don't like to dig too deep on what really happen as I chose to not relive that and be thankful to still be alive today and a walking talking miracle. I was in icu for a month and doctors told my family I wouldn't make it and if I miraculously did... I WOULD HAVE NO MEMORY Miraculously I healed and recovered... not 100% but alive nevertheless Everyday is different for me and new obstacles by the day I might be able to do something today but tomorrow it's a task that just can't be done and makes me feel really inadequate and that I can't do anything right and feel bad to rest when I need to and feel like people would think of me as lazy... I am alive today after 3 years and while in that icu I had an encounter with God and my late grand father. They both were walking me back to life as I was told that I crossed over but that wasn't God's plan for my life. That's the reason why I live my life as best I can now and live righteously. TBI is really bad although I look fine with a few scars here and there... people think I made a full recovery but nobody knows how it really is and I thought I was the only one but after reading all this posts I can rest at ease knowing that I'm not weird or abnormal. What happen to me was not planned or intentional but it's God's will for my life. I try everyday to be the best person I can be and try to share my tesrimony to touch and impact other people's lives. I know now that life is short and we don't have to live it like it means nothing... I never knew the value of life before my own was nearly taken from me. Dealing with the moods, fatigue, eyesight, not being able to do this or that is hard but hey... Atleast I'm alive to try and live as normal as I know how to be... even though I know I can and never will be normal ever again. Please I ask that more people share their experiences regarding motor vehicle accidents and how they deal with TBI. For everyone who is still alive to share your stories... Thanks God everyday to still be around to share your story and maybe jut maybe... u can impact someone life. I am a 28 year old guy who still is living 3 years ago when I was 25 and haven't grown up since then. I'm still caught up in there because that was part of my life that was lost and where my life turned upside down. Lastly I want to say... for us it was a mistake and something we could have ever known.... But none of the happenings were a surprise to God. He already knew what was going to happen and we should not question he's Till for our lives. Keep the faith and be strong and let's do our best to try and be the people we once we're and screw everyone who doesn't get u now. The ones who matter will always be around and try and understand u Don't try and nake insignificant people significant.

Hey! This sounds really familiar to what I'm going through. I hardly have days without pain I'm seeing chiropractic doctors and eastern clinical massage therapists now (these are paid for by insurance because it's considered chiropractic.) My neurologist is incredible and has me in Vestibular Therapy for balance. I'm halfway through my month of it and I already feel much less lightheaded! Athletico has great Vestib Therapists. That's insurance covered too. As far as partying, I was already a bit calmed down at the point of injury (age 30) but was usually up for a fun night out once every couple months. Headaches and dizziness probably won't stop for years, if ever. My neurologist has said it's simply considered a "behavioral change" and my Vestibular Therapist has even assigned me the homework of going out to socialize because the pain holds me back. I rarely last more than a couple hours but I realize that I also don't miss out on anything (as the more inebriated everyone gets, the less they remember anyway.) I'd say just find new hobbies or experiment with a variety of them to see if they might better get your attention - without a hangover, big perk! Best of luck to you. This is certainly the most challenging thing I've ever been through and I empathize. Give yourself some patience.. And try some new things so you don't feel like you have to get dizzy at the bar. Friends might accompany you also - and I'm sure they'd be happy to save $ on a bar tab. Sending you strength.

My brother aged 25 was in a serious motorbike accident 2 weeks ago. He broke his pelvis in 3 places, his back and his right forearm. He had massive internal bleeding in his abdomen and received a blood transfusion at the scene. More worryingly is he has a clot in his frontal lobe on right side of brain and pressure on the brain. He was sedated for 9 days and they drilled a hole in his brain. The pressure is now normal. The clot was the size of a golf ball and now the size of a dice. I went to see him on Wednesday and he was responding to pain by pulling faces and opening his eyes only briefly, he was breathing finally completely on his own, and coughing but that night the consulatant phoned my parents to tell them that if he did recover he would be left serverly brain damaged and need 24 hour care for the rest of his life. He hasn't even fully opened his eyes yet so i still have a lot of hope for my brother. He has now got septicaemia and has had another operation on abdomen to clear infection and been put on kidney dialysis to clean his blood although his kidneys are ok. They have told my parents today that they are amazed that he is still alive and that he will die. Reading this has been a great help. Maybe I am in denial but I refuse to grieve for a brother that is still alive. Thank you

hi all, read a lot here which pretty sums up my experience, i got assaulted fell back and hit the road and fractured my skull with blood and bruising at the front of the brain, first year was horrible with fatigue and trying to build strength, always told the first year you show the most improvement, to look at me now you would think i was exactly the same as before, but i have about 4 good days and 3 bads in a week depending what i do, it happened when i was 25 so im coming up to the 2 year mark, i was sport mad before it happened and obviously went out drinking a lot, i have had to turn my whole lifestyle around since the assault and haven't had a drop of alcohol as i want to give myself the best chance of a good recovery even thou its hard been young, ive tried to return to football obviously i don't head the ball anymore taken it slowly i just been doing small cameo roles at 6 a side and try to build up slowly but get immense head pain after, i was wondering if anybody had some good insight into similar experiences in returing into sport and the use of alcohol after? i`ve tried doing strength work but go light headed after and normally have a come down period of 2 days of feeling shite after, so as much as i try to motivate myself i no the after affects will ruining the next 2 days which puts me off

I suffered severe DAI in a snowboarding accident about 6 months ago.  I am very weak on the right side (get around barely with a cane), have double vision (will probably need corrective surgery), and my speech is "thick".  I was in the hospital/rehab for 3 months!  Fortunately (or unfortunately) my mind is all "there".  I can think, reason, and read as I could before.  I go to therapy now 3x per week.  I must admit wanting to "throw in the towel" every now and then for I am just a shell of a man that I once was (I did many things).  I have a wife and daughter (16yo) who are very supportive at this point.  Reading some of the stories DOES give me some encouragement that things will get "better".   Thank you all!      D

I found this in depth insight into how a person with a brain injury feels really informative and helpful. My daughter suffered multiple strokes aged 7.I know that even now 3 years on she still struggles with learning and emotions.

As an ill-health retired individual with head injury for 17 seventeen years; after being comatosed for three months i have a feeling that there is a missing puzzle in my life but can't figure out what the puzzle is?

5 years later and I still have some of the same symptoms. I am learning how to look after me because others don't know or understand the day to day things it takes for me to have less stress, fatigue, and/or confusion. The thing I miss the most I think is the ability to sense when someone is near me yet not in my visual space. So I easily don't know if someone is waiting for me to move out of the way, has come up behind me to scare me or has entered the room I'm in. My driving seems impacted by my inability to sense as well. And I am not comfortable in many places and am bothered by light changes and darkness. Thanks for this article. As others have said I will print to remind myself that others are going through the same things that I am. Things may get better but I am glad to be alive after a person almost took the lives of me and my family while trying to end his own life.

After a severe TBI 19 years ago, much of this article still rings true.  I am a special ed teacher so when the weekend hits, I am toast-sleep off my week, deal with migraines etc.  

I'm one of brain injury cases. I've a lot to share. I still see 20 days missing from my life. And sometimes i can see it all when Im angry or very happy. :)

WOW I'm everything that you listed and a whole lot more. My accident was 5 years ago. My son and I were in a boating accident. After being misdiagnosed for 2 years I FINALLY found a Dr who labeled me as have labrithine concussion in both ears and right frontal lobe concussion. I finally have been receiving proper treatment. Each day is a struggle. It totally sucks but I remind myself when I get really down, upset and depressed.....Im very thankful it was me that got hurt and not my son. We can't change what has happened to any of us. I can walk, talk, drive when I have to (I'm only 47). Our accidents could of been much worse. I wake up with an ugly headache that follows me through the entire day. But at least I get to sleep in my bed and I do wake up each day. Always try to keep your chin up and stay as positive as you can. FYI I'm sitting in the backseat of my trk taking my son back to the airport for his third year of college. Life's as sweet as we can make it. Stay strong and try not to hide the "new true you!!!!" It has taken me over an hour to type this 😜

Almost 3 years ago, a 12ft metal pole slid down and smashed into the side of my skull. The fracture was several inches long and even though the skin didn't break, it stretched as far as it could with the bone and swollen brain pushing it up. At the time there was also a depression fracture the size of a half dollar coin. Because there was very little blood and I didn't lose consciousness for very long, I was told that I was fine and to walk it off by my family. They weren't worried, so I didn't worry, but that didn't stop me from noticing all the things I was suddenly having trouble with. I needed more sleep, I couldn't stand the light, I cried over nothing, I was forgetting things. Words, memories, events, schedules. All gone. I'd get stuck trying to find a simple word like "dryer" while doing the laundry.

3 years later, and my head still hurts. I still have periods of confusion, but I do hide them better. But 3 years later, and everything on this list is still so relevant. If I'm feeling overwhelmed, I withdraw, and even though I try to push myself to the point and past the point of being overwhelmed, I know that may not be the best medicine. But I still have so much trouble conveying that I am trying. I'm not lazy, nor have I become stupid. I'm glad to see I'm not alone in this.

Two months ago I suffered a TBI, skull fracture the length of my skull through the thickness of the bone, two brain bleeds and an occipital hematoma. According to the doctors I had the most severe concussion one could have without requiring brain surgery. I have lost a nonessential part of my brain permanently. Although I look normal on the outside, I feel so different on the inside and haven't been able to express in words how I felt. This article explains exactly what I am going through and I am sharing it with all my family and friends. Thank you. I am glad I am not alone.

It's been 8+ years since my TBI.  All of these things still apply.  Just the other day I was reading (which wasn't possible at the beginning!) but what I was reading required a lot of thought and I was sick for the next two days.  It sounds ridiculous to say it out loud but thinking makes my brain hurt.  Thank you for re-posting this article.  SO true!

Barb J

This article is still relevant in 2015, thanks SO much for publishing it!
On October 4 2014, I was crossing the street in a marked crosswalk with my boyfriend when a man ran into me with his Ford F150 and purposefully attempted homicide. 

I would've died if my boyfriend hadn't attempted to pull me out of the way. I had to relearn to breathe and walk unassisted and, while I'm INCREDIBLY lucky that my boyfriend pulled me forward when he did, this injury has still set me back about a year (approaching 10 months in the recovery period now).

I've been working with the fatigue and a new sort of mental fatigue that is quite difficult to put into words. I'm so glad to be able to use ANY words now though - couldn't express myself properly through speech/writing (relearned how to write too) for weeks! I'm steadily improving, but patience is IMPERATIVE. I can't say enough how I appreciated the acknowledgement of how important patience is to the recovery process. We are rebuilding entire pathways in our brain after all, it's absolutely necessary and not to be taken for granted!

Thank you again, linking to this on my blog!

This is one of the best articles I have read that totally explains what I have been going through. I was in a head on collision in 2012 and suffered with headaches and this feeling of just being "off". It was very difficult to explain or understand. I started getting some treatment a year after the accident from a chiropractor who specialized in headache control/relief. After months of treatment the symptoms started to get somewhat better. Then in 2014 I slipped on the ice and hit my head again pretty severely. This started all of those symptoms up again about 3 times worse than they had been. Now having had 2 concussions within a short amount of time and being a busy person thinking I didn't need to take time to recover, I tried to keep going on. Around the middle of last year my head decided it had done enough and just quit allowing me to function right. First my eyesight went from seeing ok one day to not being able to focus in on things, then the headaches got so bad they never stopped.  Then it go difficult to drive. I finally saw a neurologist and was diagnosed with post concussion syndrome. Unfortunately there is no quick fix and I am doing Botox for headaches, vestibular therapy and vision therapy. I am having some better days but like others have said, there are still lots of bad days too. I have become an expert on understanding most of my triggers though and that has helped me to avoid certain situations that may be difficult for me.  

Wow!  Don't know what to say!  I have suffered my third concussion in three years on June 12 of this year.  I was already struggling and being treated for Postconcussive Syndrome from the two in 2012. Need I say this concussion has added insult to injury (no pun at all intended)?  This article is beyond perfect and says what I am struggling to convey to family and friends who see me as some sort of anomaly.  This should be at every Dr's office, healthcare facility, and hospital that treats patients who have suffered TBI and given to the families as required reading. Thank you!

I am a survivor, at age 3 I fell from a balcony to the concrete steps below. i was rushed to the hospital. i was in a coma for 3 months and on valentines day 1978 i was given a plaster replacement for the shattered right side of my skull. i am now 41 have a wife and daughter and with some coordination defects on my left side. i have regained all my physical movement although struggle with spelling, and comprehension related issues. my hope is i can find a way to GIVE HOPE to those that have or are experiencing similar struggles 

I was in a motorcycle accident July 2005 on I-76 in Brimmfield Ohio and it has been amazing. where I have been since then working as a Electrician for Lockheed Martin in Akron Ohio and then in Reston Virginia. I don't even understand how I made it from NE Ohio to living in Harpers Ferry WV to commute into the DC Metro area to work. After all those blessings I was laid off in January of 2012 and I returned to NE Ohio and slipped into a rut having the fear of people and it has been creating a employment nightmare for me. I have been having major health problems related to my past TBI and no insurance to get medical care. Really at a point where I just want to give up! I did try the healthcare.gov site that turned out to be a dead end also.

Lost in Ohio Mark

Great list and all symptoms I have suffered from one degree to another. I had to learn to drive again because my attention span was so short I would forget I was driving if I looked away from the road for a second.

All this was caused by a surgically induced TBI from an ENT that was performing a ‘routine’ sinus surgery. He punched two dime size holes into my brain and pushed sinus bacteria into my brain then tried to cover it up. The resultant brain infection pretty much scrambled my short term memory and the follow on brain surgery removed ½” of necrotic left frontal lobe.

This has led to all sorts or memory issues as well as typing dyslexic. Everything comes out backwards. For years I was ridiculed by my wife and kids for my poor memory. I would repeatedly tell them if I don’t acknowledge you and confirm what you’ve told me then it hasn’t registered.

After ten years I feel pretty much normal but still have issues of recall when trying to think of things. Just glad I’m alive and functioning pretty well. 

I wish more people could have access to this excellent article.

Wishing all you survivors out there the very best and steady progress

in your recovery. I know it can be frustratingly slow, but keep going forward.

I had a TBI in June, 2012. I fell 13 feet onto a concrete floor. I have not been the same since. I sometimes feel like I am a person watching an animated body in autopilot. No one anywhere is sympathetic to my problems. Which is weird--I don't want sympathy, I want functional understanding so the New Me can function within the previously existing system I lived in. But that seems impossible. No one around me is willing to flex at all, or to encourage what I am doing well, and they make wild accusations about the discontinuity previous to my injury. I am not doing anything wrong, but still I am abused by those around me who in their ignorance do not understand what comes of a TBI. It is very despair-inducing. I am not improving at all, which is also despair-inducing. I wish that American society would pull its collective head out of the sand and stop insisting that every living creature be a perfect healthy happy clone. I am not happy, perfect, or healthy and as much as I would like to be, it's not in the available options. The very last thing I need is judgment for memory lapse, emotional breakdown and social fear. I am sure many can relate. Love is what we need.

This information is invaluable.  When I thought I had a basic understanding of post TBI conditions I did not.  My nephew was in a near fatal car accident in 2007 and to this day struggles in so many ways, and we realize now that his brain cannot fully recover.  It hurts to see him frustrated at who he is now versus who he was before his injury.   With better therapy and good meds, he is managing.  This information would have been such a blessing when he was first injured and going through the first year of physical and brain rehab.   Thank you for putting this out here for all to see.     For the multitudes of wounded warriors and their families I have befriended over the last ten years, and for all those  who suffer with TBI .....those families could have had a much clearer understanding of the TBI had this been available.   But we/they have it now...and we will do all we can to share this article.

I had a brain tumor removed from my brain stem 54 years ago. I woke up a human vegetable I was blind and could not do anything but hear. It took me over two years to mostly recover but have dealt with aphasia and balance problems ever since. I have had a wonderful life, married had two children and a great life. My children grew up supplying words when I couldn't find the right ones. Now my grandchildren say that they can speak grandma too. Mostly when I am tired.

This is really very interesting to me. This sums up my experiences, which have been getting worse with time. I didn't have one specific injury, but as a result of clumsiness and recklessness, I've had nearly 10 concussions in as many years. I'm finally seeking treatment for my anxiety and panic disorders(almost always caused by over-stimulation) and my provider suggested Post-Concussion Syndrome. I plan on seeking advice from a neurologist, but I want to cry because this makes so much sense and it feels like I finally have an answer that has eluded me for so long. Thank you for this. 

My brother in law is brain injured. Love him to bits. Another thing that occurs to me though, on reading this, is how much it reminds me of dyslexia. In many ways processing is time consuming and affects my ability to cope in similar situations. Of course, not to this extent. But I thought the similarities might have a basis from a biological science point of view. I'm dyslexic and suffering from stress also because the people I worked with did all the things the article says not to do. But they knew what they were doing. I'm currently suing. My dyslexia mainly revolves around short term memory problems. I also can train my brain but also forget basics not done regularly. I have to think through very basic things with great care sometimes. I related to a lot of the points in the article about processing, tiredness, repetition and emotional ability. Brain injury is misunderstood. I've seen my brother in laws condition misrepresented at mental illness in an court case with appalling consequences. And it's so obvious! Dyslexia is also hard to understand and I've suffered as a result. People can't accept what they can't see. Anyway, I just wanted to say thanks for the article. Very helpful. Julie Prince Ilkeston Derbyshire

Truly beautiful ...

Every thing listed I deal with every day and night. I was in a motorcycle accident and got hurt very bad. emts said I was dead, Drs said no way I could live. I live with ptsd and a brain injury but I'm alive.

Well, find this place has been very interesting for me. I think there´s also other kind of TBI and is caused by pathogenic agents like virus, bacteria and protozoa, I´m a 35 years old male, in my case five years ago my brain was massively affected by HIV, generating me HIV dementia phase 4(nearly to death and bad forecast), that´s Alzheimer like, temporarily(six months) lost nearly all my skill, my short term memory, i came on wheelchair to the hospital, i could move me , i was full of spams, i didn´t recognize my family. Reading all the post i feel me identified with many things said here, many thing that i happen on my recovery, it was between 3 and 4 years oscillating between frames of mind, i was a kind of bipolar, with memory, coordination, speak, movement problems, it´s sooooo hard, finally i´m nearly ok, if you see me you couldn´t say all that happened to me. I feel that my personality changed in some areas, i feel more lonely, some kind of proud about survive to all this by my way, work is not the same, the routines are not the same, i initeriorized a kind of double stigma HIV and a TBI like at hour of romantic relationships, this area has been the hardest, too ´cause after my illness i have had libido problems, loss of desire, impotence, loss of interest on same sex(i´m gay), my endochrinologist told me that possibly is caused by hipocampus damage in the libido area after see my MRI. A great medic friend told me that give me time(but has been five years with little improvement), ´cause in my case neuroplasticity has made wonders, but i miss so much sexual area. I would know if there´s any kind of hope about libido return. Thanks for read me

My husband suffered a TBI in June 2012 from car accident. The doctors told me he would die that fateful night. It has been hard to witness a man who would love gardening to clicking the remote over and over. He is so different and I wish there was more support for the caregivers. The TBI person gets the support and love..but as a caregiver for my husband and epileptic brother....really wish more support. Bachc1958@gmail.com.

Hello everyone I am a brain injury survivor was hit by a truck on a highway at age 11 was found dead for three hours and put in induced a coma doctors said I would never wake up and if I did no chance of me living properly. I woke up not knowing anything had to relearn everything doctors said I would never walk again, but I did people have told me every one of my goals was going to be impossible because of my TBI but I am a professional musician, rapper, computer system repair professional, published poet and public speaker. Even people who have a TBI, or other injuries can do amazing things I can relate to how hard it is to believe in yourself, but as a survivor to others like me just know we are all miracles that can do anything

My little girl suffered two TBIs four years ago at age thirteen during brain surgery. One of them was a stroke which initially left her paralyzed on her left side. She is severely autistic and non-verbal as well. She has recovered a lot of movement on her left side, though she walks like Quasimoto, and seems to have frequent headaches. She has poorly controlled seizures, serial episodic vomiting and often stays in bed till early afternoon. She is missing part of her skull which they were unable to replace because of complications, so she wears a helmet to protect her head. Reading these stories gives me more insight into how to help her have better days. Thank you. Is anyone else out there walking around without part of their skull?

PERFECT LIST! I've been accused and treated as though I'm healed now and it drives me nuts! The stuff on the outside- that's the physical right? everyone expects me to be healed and fine (17 years later( just because the outside is healing and much less obvious than say when I was in a coma! But they'll never have a clue about the s*it going on in my head! lol This list just says everything so well and focuses on where the problems really are- in my head! Printing this and framing it!
All the best;

Tami
tbiretreat.wordpress.com
tamaragilford.com

Thank you for sharing. I struggle with contraction and focus with too many noisy things going on around me too.

Thank you Thank you Thank you - this article describes EVERYTHING I've been facing since I had a sub arachnoid hemorrhage in December 2014 - I feel so alone in coping with the issues - and the Dr's keep saying it's all normal, but until reading this and all the comments I had a hard time accepting that.  My main concern is they can't tell me why it happened so how do they know it won't happen again.  But knowing others are facing the same symptoms does help me not feel so alone.

Almost three years ago I fell onto a hard tile floor due to an absence seizure and severely injured my brain. Taken to hospital by ambulance and was in an induced coma... five weeks in the hospital. Finally the problem was diagnosed and the correct medication prescribed. I quickly came to myself (sort of) and was discharged. Off driving for a year. I cannot remember many things from that period, so my family filled me in. I still have memory lapses and I think I am still on the slow road to my normal self. Many thought i was not going to come back when I was in hospital. God is powerful in this. I continue on my road to recovery. This article showed me what I am going through is what I can expect. My prayers continue.

TBI ... you only know it if you live it

I want to add recovery never ends no matter how many years pass. In my case I have very little pre severe closed right frontal lobe tbi memories at all due to my head injury occurring at 9-10 months of age about 25-26 years ago ( in the age range with the highest fatality rate ). The fact I have memories from before at all is due to hyper development of my brain prior to the injury resulting in a cognitive age of 12-13 when the injury occurred. The only reason I survived is theorized to be other abnormalities in my brain that minimized damage, and excluding minor behavioral issues and difficulties with soft social skills and short term memory I have recovered very well. I had years of therapy though and for two years of that I could not articulate properly and was " trapped" in my mind and suffered from suicidal depression by age four. All these years later articulating my thoughts into words can still be an issue and I still fumble words on occasion. All the tips on this list represent what people should know at minimum.. Sadly they don't and getting them to understand can be a pointless endeavor. My injury has been with me my whole life more or less, at 26-27 the thing I notice most is people ( especially family) still treat me like a child, or a freak because I am different and can never be normal because I never knew how to be that way in the first place. Even my friends notice my oddities many I can't control and try to " help" me unaware that I have spent my whole life coping with these issues despite my explanations. If I could have one more thing added to the list it would be : Don't presume I am stupid due to my head injury, don't think I lack comprehension of what it has caused and changed in me, and never tell me my tbi is an excuse or not the cause of my behaviors when I know it is and exactly what it triggers. And never point out how abnormal I am because I am fully aware of this, and it kills me inside some days to know that I never had a chance to be normal, just imagine what that is like.

I had a Closed head injury in 1990. I have progressed mentally. I am still in a wheelchair or walker. Reading all the success stories has inspired me not to give up!

Tony

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