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

In my journey back to reality I have found this site and others to be extremely helpful in this transformation.

Laughing when I'm searching for a word is neither humorous nor helpful. Pressing me for a response in a crowd is also not helpful. Sometimes trying to respond in a crowd puts me in the position of repeating what I hear someone else saying the middle of my response. It's both irritating and distressing. Maybe you can function with half your brain tied behind you but I can't.

I had my injury 10 years ago now, without all the support from other tbi survivors and lots of wonderful people I probably wouldn't be where I am today with a wonderful family and grateful for all I have. Heck I even recorded my own cd, I'm not some amazing singer I just needed to keep the challenge in my life and not give up as can sometimes without support out there. Don't give up everyone we all have a purpose even if only to be there for others just starting this frightening journey x

It's like being trapped inside of your own body and brain, never being able to escape or understand. Kristin

I fell down and hit my head so hard that i broke my neck at C5-C6. It took 9 month for the doctors to diagnose and performed surgery. even after 6 years and in constant pain management I have been in total denial. I was reading a recent medical report from my doctor and it said TBI. I cried when I read this article because I have completely dismiss the fact that my brain still in recovery. I am not allowed by my doctor to do more than 20 minutes of Zumba a day only twice a week. Yet I try to behave like a normal person. I have TBI , It sucks, I want to be treated with compassion but this is only going to happen if I have this compassion for myself.

Thank you, I needed to read and come to terms with TBI!

I CAN RELATE TO THIS POST 7 / 12 / 1991 PLEASE CONTINUE YOUR ADVOCACY LIFE AFTER DRINKING AND DRIVING I LOVE YOUR POST

This article should be read by everyone that has suffered from or they them self is suffering from: https://www.dovepress.com/treatments-for-traumatic-brain-injury-with-emphasis-on-transcranial-ne-peer-reviewed-article-NDT

I have recently started to date a friend of 2 years for 2.5 months now, and not being intimately involved with him until now, I am surprised by how different he is than what I thought him to be.  He told me in a conversation once, that he gets migraines due to a mountain biking accident he had (hit his head in a helmet and compressed his neck/spine).  I feel so very heartbroken at how he treats me, yet - for some reason I love him and am still with him.  It seems at times that he is a completely different person than I thought he was.  He is a good, kind, generous, loving person - but then he will behave so "selfishly" and hurtfully that it tears me apart.  I don't think he knows he behaves like this. I feel like breaking it off with him because it hurts so much.  But then I remembered his story about his head trauma and decided to research that.  What I have read here written by courageous TBI survivors has given me something to think about.  Thank you so much for sharing, and for easing some of the pain in my heart.

I fell and hit the right side of my head on concrete in July of 2015.  I went to ER and had four staples.  I had a cat scan that was normal and was sent home and told I would likely be better in a few days but to follow up with my family doctor in a week.  I was far from better.  The world was spinning and I could barely move.  I had issues with both light and noise often wearing two pairs of sunglasses while in my home.  The headaches were awful.  I saw my doctor and she wrote me off work for another two weeks and referred me to vestibular therapy.  This therapy helped a great deal as the vertigo finally eased.  My life however felt like it was still upside down as other symptoms persisted and due to balance and perception issues I was still limited in my abilities.  I work in a stressful and fast pace environment but it is a job I love because the people and youth that I work with are amazing.   I am also a bit of a work-a-holic and a control freak.  All of a sudden I found myself in a completely helpless situation.    I felt so depressed and I cried almost daily.  I am now on long term disability and have finally had to accept that this is my new life, for now.  The reality that this situation is likely going to take at least a year for me to recover from this injury has helped me manage some frustration as I know this is going to take time and that I have to be patient.  I have often spoken with others who have brain injuries and realize, this could have been a lot worse.  I believe that everything happens for a reason and that maybe this injury has occurred because I need to learn to relax more, slow down in life, and focus on the things that matter.  I still struggle with processing information, headaches, and nausea that comes with motion but I continue to work with my doctor, a neurologist, a physiotherapist, an occupational therapist, and I try to maintain monthly massages due to some neck pain.  Hearing other survivor stories are helpful as I know I am not alone.  I have also learned the importance of trying to be optimistic of the gains I have made, no matter how small they are. 

This made me cry. It absolutely is the way I feel and couldn't convey it. Before my car accident I was an extroverted, happy, up and coming actor/writer, and a doting loving father. and since my concussion 2 YEARS AGO I have been an angry, frustrated loner seeking help from doctors that has yet to come. My family is loving and does its best to help me but I'm sure their frustrated with my slow improvement. Thank you for sharing this

January 16th, it sounds like you have done very well after your concussions but you may want to think about a different career, one where you aren't required to work at a fast pace, where you can be more successful.  Speed of processing is not usually a strength after a brain injury.

Barbara

Dear Jan. 17th, please call the Brain Injury Association of whatever state you live in for guidance and resources and support groups.  You are not alone!

Barbara

I remember a severe blow to the head at 3.  I fell and cracked my skull at 9 (lost consciousness) In late teens and early 20's ,I was thrown from a car (lost consciousness). When 35, I fainted from illness and passed out, slamming my head into the doorway molding, then losing consciousness ( not sure of the time from fall to time when my eyes opened up ( looking at the ceiling.)

Now. my 50s, I suffered a blow to the head that left me "stunned". My last accident was 8 weeks after the blow and my balance was not at it's best. I landed head first onto concrete.

Here is obstacle..Please ANYONE.?

My Parents, siblings, and 2 of my 4 adult children do not speak to me. I am accused of being on drugs (I am not). also told that I am "not right", and that I repeat myself... I was not invited to Thanksgiving  or Christmas. My feeling are hurt deeply...almost to the point of leaving me useless...has anyone been in this ? What can I do (I just called a parent today and was told I should call more)  :(   as I the only one who is sitting and shocked?

I have had 6 concussions, one due to a near deadly car accident. I used to be really sharp but, now honestly I feel dumb. Things don't come as fast to me. I have to ask people to say things twice because I don't pick up on it the first time. I work in a fast pace kitchen, and I, at times feel like am a week link. It's disheartening because I feel like I'm not me and I don't understand why. It's a struggle, I don't sleep and it's hard to explain why I'm depressed. People don't understand.

It has been almost 23 years since I got TBI due to a car accident in 1993.  Everyone thinks I am fine because I look fine, and I just physically look fine, I have worked a few jobs since then, however I do not seem to be able to continue working at these jobs, mostly because if I ever make any kind of mistake, no one ever thinks of it as having anything to do with my TBI, because they don't think of me as having TBI because I really dont seem to have anything wrong with me. I've read the above information and it is so true and relieving to hear that other people actually have the same problem I do.

Excellent. Never had read or able to put all those thoughts together. TBI survivor almost 34 yrs.

I am crying because, I have found more like me.   I fell at work, Sep. 24, 2015. I work in a hospital.  I went airborne back words, like a football player being clipped from behind.  I landed on the back of my head, and upper /neck/back.   My head bounced two times that I remember, it may have been three times off a concrete floor.  I am missing some of the event, and it is believed that I passed out.  I remember black spots, the wind being knocked out of me.  At some point I remember a lot of people surrounding me, I was on the floor, I think I was shaking, my uniform was becoming wet.  People were attempting to sit me up, move me, but I think I heard myself say do not move me my head hit the floor hard.  I was crying, they shoved a pillow under my head, that hurt really bad, I was nauseated, my vision was blurred.  Sounds around me were not normal, they were hyper loud and the lights seemed brighter.  I was moved to a gurney, then to the ED.  CT, was normal. I was sent home with family.  My condition declined over weeks, and the first three months... etc. It hurts to think, to concentrate, to task, to think of words to speak with.  At times my speech is better and as I tire it worsens.  I sleep less than an hour at a time.  My hair fell out in clumps, and is still falling out.  I had a large hematoma parietal, and occipital areas.  It hurts to touch my hair with a comb or brush.  The brain spasms, cramping, squeezing, burning, sharp stabbing, pulsating pains are beyond description, The roaring nose in my brain at times drowns out external noise.  The short term memory laps nearly cost us our home.  I left soup on the stove to heat, forgot it. This does not scratch the surface.  Thank you to everyone for your post. 

It feels really good reading my thoughts. TBI's are awful injuries & those suffering I feel your pain. I was in a severe auto accident in 2005 & since that time my life has never been the same. Seems to always be a struggle.

I had a head injury 3 years ago on my job  and ever since then my life changed for the worst. My supervisor was short tempered with me and jumped on my back for  not doing things right. He said "I have a disability and it don't stop me." He had gout in his feet when he ate rich foods. He thought I could just get over it. I had headaches, short term memory loss and I got confused easily. This past summer my job was cut along with 20 other people. I moved away and resettled in a place I thought would make me happier. I prayed for a job and God lead and employer which hired me, but I am having a hard time with my supervisor. He has little patience with me. I haven't told him about my injury, but tonight at work I will. I don't know if it will help or hurt me. I am just going to put it in the Lord's hands. I do get deeply depressed and feel like I'm no good anymore. Just because you look good on the outside don't mean your good on the inside. No one cares about people with head injuries, they just think we are lazy. 

I could not read it all because of my brain. But I am crying tears of joy because this feels like home.
 

I had a deep breath of I'm not alone, thank you. It's been 17 years and I have managed to hold 8 jobs.  I've quit 6, been let go from one soon to be two.

I was in a coma for 4 days, I believe, it was after being hit by a vehicle while I was walking in May of 98, I was drunk, and Dr said being drunk probably saved my life because I didn't tense up, yet at the same time I think it did kill me.

I look fine and I can't tell employers during interview I am brain injured, or I get no jobs. I am told don't use it as an excuse you've had jobs, you can walk and talk fine, and it's been 17 years.

There was a part of my rehabilitation where I needed to talk to a brain injury survivor, and he told me he had lost everything his wife, house, job, kids. I find myself now in my birth country without family, having to make new friends after having the same group of friends for at least 20 years.

I wish people knew how I felt

Hi there my name is Kyle I had a bad accident motorbike I find it difficult to remember what people are saying about anything it is very hard

This page is extremely helpful, and it describes exactly what I'm going through. I'm just reaching the first year mark of recovery from my tbi and it seems so hard for people to understand what I'm going through. They all expect me to be better by now but it is so hard having to relearn what I forgot how to do and rebuild problem solving skills.

I'm so glad that this page exists and I can share it with people so that they can get a sense of why I'm acting so differently than I was, and why going through university right now is the hardest thing I've ever done. This is amazing and the huge amount of people posting here makes me feel so much better now that I know I am not alone.

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.  

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