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

These explain me pretty much to a T. And my tbi was at birth, so I can only imagine how confusing and frustrating these changes are when a tbi occurs later in life.

Please do a google search for rick simpson n phoenix tears. There are some ebooks that are helpful concerning tumours amoung other things n how to improve ones' condition. You can donate or access them for free. The point is to help people n empower them in their health. Be well~

Thankful for this article. I couldn't read all the comments to see if anyone with chiari malformation could relate to this (I might read them all on my next sleepless night), but I can. Chiari malformation is a condition where part of your brain (cerebellum) hangs out of your skull and possibly into your spinal canal. My chiari malformation has caused a syrinx (cyst in spine pressing on my nerves), scoliosis and problems with my neck.

Chiari malformation doesn't just suck because of all the different symptoms, but also because you appear to be healthy so people don't understand that you're truly suffering and impaired. One moment I'm fine and the next I'm not. Some days my symptoms are more physical, such as horrible head and neck pain, right sided weakness, my right leg drags, pain and tingling throughout my body, lack of coordination,  or drop attacks. Other days my symptoms are not something you can see when you look at me: confusion, difficulty with memory, speech problems, dizziness, trouble focusing, irritability due to over stimulation and depression. 

I don't think I would ever want anybody to be able to look at me and see my invisible illness, but looking well on the outside when you're not on the inside can be extremely frustrating at times. People may suggest you just need to take certain vitamins, exercise or you're faith is just not strong enough for healing. You know friends are disappointed when you back out of something because of your illness. You wonder if people think you're lazy, attention seeking or weak. It's bad enough when you wish it would all go away but it won't; it's even worse when you finally accept the way you are and others don't. You want people to understand what you barely understand yourself.

Thanks for this article.

Hello,

A good friend of mine received a traumatic brain injury a few months ago. I came across this article looking for different ways I could support her on the long road she now faces. She has just recently moved from intensive care into a rehabilitation setting. The rehab home she is in seems really good and there is a lot of support for her with physical things - swallowing, starting on soft pureed food, using the toilet instead of adult diapers, standing, walking, talking, washing her own face etc as she slowly becomes able to attempt these tasks. They think that in time she may be able to speak again, possibly be able to walk short distances, eat soft food and they are currently discussing whether she will need ongoing care or whether she will be able to go home eventually. She has made excellent progress so far, and the rehab home have been good at trying to show us how to support her with physical tasks, like using the artificial tears to ease her dry eyes, and artificial saliva, things like that. But they have not given us as friends so much information about the actual cognitive side of things, so this article has really helped me to understand better. 

Thank you.

It is striking how similar many of the "thinking" effects are with other conditions. This article has helped improve my understanding and I know now to not overload her with too much chatter or changing the subject too fast etc. It is hard at present as she is very limited in how she is able to communicate with us. She appears to understand what I am saying to her, for example if I tell her about something that has happened and she doesn't agree, or is annoyed etc she swipes her arm to the side. When she approves of something I say, she lifts her arm up and down in a quick movement. Sometimes when I was talking she would thrust her hand forwards as if to say "STOP"! I had assumed this meant stop talking and so would shut up, which makes her do the sideways arm movement. I had felt confused, now I realise maybe I was talking too fast or she needed time to process.

I wish everyone who is living with a brain injury all the best for your future.

Emma x

I have a rare malignant brain tumour that surgery, chemo, or radiation, will not shrink. ...but can cause more damage. I read this article and found that I related to each and every one of the symptoms and more. Even though my problem has not been "fixed"I still have those around me that either forget because I look nearly normal on the outside, and imprisoned on the inside.  In my case, it's impossible to get others to accept and understand without  accepting their own fear and sense of loss...no matter how embarrassing or angry they say the symptoms are. As the tumour grows, so do my symptoms. There is nothing I can do about that...and yet so often they think it is in my power. If that were so...would not the pain? Would not my ultimate death?

Juanita van Tol Martel

Thank you this is so me

Thank you!! This is the most helpful read and information i have received in more than 9 months in dealing with a beloved person who suffers from brain injury. Thank you

Wow, thank you!!! You just discribed my husband's issues and I had no idea, how much he is frustrated! 😔

I spontaneously started to cry when reading this. I wish I had read this article 12, at least 10 years ago.

I never knew during all those years how to tell people around me what's going on with me after TBI. How to even correctly describe the symptoms to the Doctors. Myself being a language professional, I simply failed to make them understand. I was never able to express the problems of my brain with words.

I usually said :  "If only I were able to describe, then I would not have these cognition problems. I cannot explain the just because of the impairment."

Most people did not understand me in our fast-paced world. And in fact, our modern world with its modern technologies is advancing faster than I can follow. And after 12 years of living with brain impairments, I am pretty much alone, behind, whilst former "friends" moved on.

Nevertheless,  I have never been enjoying Life more than in the 12 years following TBI. At least I know now how to cherish ever day and to enjoy every moment. Slowly. At my own pace.

If only the CAPTCHA of this website would be better adapted to the needs of TBI survivors. It is a technical challenge for me to post this.

Audrey

I've had two emergency brain surgeries after being assaulted by 5 grown men with baseball bats when I was 12 now half my skull is metal but the hardest part of recovery was mental and the frustration with some of the aftermath like my horrible memory

Thank you this explains what is going on at the moment for me approx 8 weeks after 2/3 brain falls & knocks. If do too much am wiped out. V. hard to tell what level of activity is ok or not. 2:steps forward 1 step back.

I suffer from OCD and let me be the first to say here after reading all your comments that a lot of these issues listed actually i can relate to.

God Bless you all for the hardships you all endure. May you seek justice in having mental freedom one day

I fell on January 2nd of this year and hit my head very hard on the concrete. For a while I thought everything was fine but I'm finding out, it's not. I'm just now back to work full time and am finally getting some treatment. That list is pretty much me. I'm trying but it's not easy. Starting to come to grips with "the new me". Just wish everyone else could.

There is always hope. I have progressed further than even I expected. Someone asked why I wouldn't want my old self back. I am so much more full of life now than ever. I do have limitations. The greatest thing I discovered on this journey, is how to live in the present. The past is sketchy at best and the future requires too much thought. The other great thing I discovered is that this brain injury is a loss of self and that it affects the whole family. As soon as I was cognizant of this idea and I began to legitimately mourn the loss of myself as I knew me. I had my identity crisis and I began to find the best ME, I could ever be. I am so thankful someone put into words so many feelings I couldn't. I can print this out and share it with people who might not "get" me. My injury is 13 years old. I have chosen to nurture it lovingly as a child whom one wants to grow up healthy and strong, rather than treat it with hate and disdisrespect which would raise an unruly child. Thankful are another gift.

I am not sure if what I went through is concidered TBI or not but all of this sure fits what is going on with me. I have had colloid cyst removal of the third ventricle, twice in the past twenty years. First my long term memory was messed up and now my short term memory does not function well. I get stuff occassionaly that sticks but most of it feels like it falls through the wholes. I look fine physically but mentally and cognitively I am not. So my question, I guess would be, would those two Neuro surgeries be concidered TBI? Thanks in advance for your replies.

Hello; I have tried to post a couple of other things here, but have been unable to see them posted, so I don't know if I have done it correctly, so here is another attempt.

I suffered by brain injury during the first of a dozen or so surgeries to remove a nearly 15 year misdiagnosed/undiagnosed benign cystic tumor in the middle of my brain.  Apparently, I suffered a hemorrhagic stroke when a surgeon retracted too roughly and damaged a major artery in my brain causing a "micro hemorrhage" as my family was told.  Sounds like a contradiction in terms to me.  This left me nearly paralyzed on my left side and with no memory for at least a year and a half, as well as other cognitive deficits.  As a result, I lost my job, my ability to skate and compete (on an adult synchronized skating team), and my independence, among other devastating losses.  After A LOT of hard work, I was able to reclaim about 90% of whom I once was.  From what I have read on this site, I am not alone in my losses and in a strange way, it is nice(?) to see that others can commiserate and empathize and not just sympathize. It is great to be able to have a "safe" place to talk about my experiences without having someone tell me that I should get over it and just not think about it anymore.  I'm not a glutton for punishment and certainly would if I could and perhaps being able to vent about this could be cathartic and I will be able to forget someday.
 

This all sounds like chronic fatigue and being annoyed. Also can be confused with menopause., irritable aging depression etc. brain injury sounds a lot to me like nerve damage all over

~In October of 1999, I suffered a brain injury during the first of around a dozen brain surgeries to remove an approximately 15 year misdiagnosed/undiagnosed benign brain tumor, which caused me to experience vision loss as well as other visual phenomena in addition to the severe headaches every day.  During the first surgery, I'm told, I suffered a hemorrhagic stroke that left me nearly paralyzed on my left side and with no memory for at least a year and a half, as well as other "cognitive deficits".  The tumor had already affected my metabolism before the surgeries as I was a figure skater on an adult synchronized skating team, practicing up to six hours per week with the team as well as on my own depending on how close to a competition we were, and still could not lose any weight.  During this time, I self-medicated with combinations of analgesics to "manage" the severe pain.  It never really went away.  In addition, I was losing my vision in a hurry, going through glasses prescription after glasses prescription until the surgeries.  Despite my numerous complaints to many different medical professionals, NO ONE followed established protocol and sent me to the hospital to get a CAT Scan or an MRI or even refer me to a specialist until it was almost too late.  By the time I was finally diagnosed, I needed emergency brain surgery, but because I had gotten so efficient at managing the pain on my own, I didn't take the neurologist seriously when he said that I needed to meet with a neurosurgeon immediately and instead insisted on attending training in upstate NY for the next higher position at work and drove there myself.  I'm told that I sent everyone into panic mode. 

As a long term consequence of my injury, I lost my job, not that I could remember where I worked or what I did for work at that point anyway.  I could not remember having been to college and what my degree was in or even if I did indeed graduate.  I also could not remember having finally achieved my childhood dream of skating and competing in a national competition at the age of 32.  I didn't remember getting married and to whom and did not remember who my family and friends were and their names.  I didn't even know my name, age and my birthdate.

Now, almost fifteen years later, I'm told that you would never know by looking at and speaking with me, unless I told you, that I had any of this going on in the past.  I worked very hard to achieve this so that I could go back to work eventually.  Fortunately, I have been able to get and keep a part-time job that won't stress me out and cause my memory to tank.  It is still like walking a tightrope as far as that is concerned.

This is a wonderful article. My TBI was 20 years ago after I was rear ended by a semi. Thankfully I was pregnant, so they had to keep me in the hospital instead of sending me to a nursing home. My coma lasted for 3 months. My son was born healthy and is now 20. After I woke up, I compared my brain to a jigsaw puzzle that got mixed up. As I would get a memory back, the piece of the puzzle would be put in place. Not every memory is back, some will never be back, but I am alive, have 2 wonderful sons, and am getting re-married next month.

This is so awesome and so me! Very well written. Thank you for sharing!

Thank you for this list this list of items I have asked requested and hoped others would donot many people do them however eveeverything on this list I am affected by sadly said... I just wish sometimes people would show some more support... I am currently trying to lose weight that is just one step towards rebuilding my self esteem and self image of my self..

I can't even put together all I wanted to say....wish I had a shirt that said..." Hold on ..give me a minute....TBI survivor and I am still processing what you said! Thank you for your Patience!" Most times they've already walked away or shut me off from the conversations.

Yep I hear ya pples it's like this fee me.....I feel like a dog that is caged and the cage is open but I dont see it and ima wondering just how I can get out of it

All I have to say is Thank You. Thank you so much.. Some of these things I did not realize could be related to my TBI. I feel at peace and more self-aware from this article and the hundreds of others who have commented.

I have a friend that has a heart pacer the battery died and he had a stroke he can't talk now or read what are the steps to for recovery!!!!! Please help

2017 will be 40 yrs since I was blessed with a 'bruised brain stem' from a head-on collision. If that's not a TBI then I don't know what is. In 1977 I did not have the kind of resources that we have today. I came out of a 32day coma with every sign and trait that I have read about only recently..However in those days I snapped back, looked fine,and was sent back to my Hi Skool where for the first time ever, I got to experience 'SummerSkool', in order to graduate.As I said, I 'looked fine' but I can remember going through each and every symptom described in the article here. And a few more that I can't remember. This description is among the most accurate that I have seen thus far............ Life Goes On

Gee, I wish I had this 14 years ago, when they removed my GBM!!  This is WONDERFUL!!  THANK YOU SO VERY MUCH! Now, we just need shirts that say all of this!

Lauri a/k/a NeonDiva Holland

Hello everyone, I'm Shawn and I was teaching my best friend how ta ride his brand new street bike on June 16/2000 when I was hit head on by a brand new four door one ton Dodge Ram 4x4 longbox truck that the guy who made a completly illegal left turn across a solid double yellow line and took me out at roughly 120km/h ta put it easy. So I have a major TBI and they said Id never walk or talk again and I spent 13 1/2 months in the hospitals and the first 3 1/2 months in a comma but now Im back to about 90% and I took myself of EVERY medication and I take one 100% natural/organic medication and I feel like a MILLION BUCKS!!!!! What everyone thinks and the REALITY are two COMPLETLY diffrent things!!!!! You should NEVER judge ANYTHING you have NO idea, cause one day you NEVER know whats around ANY corner!!! From Shawn

I am 30 and I sustained a severe TBI as a passenger in a car accident on December 30, 1998. One thing I want to talk about that I haven't seen put on here yet is the statement, "You've changed," or "You're not the same as you used to be," are some of the most disrespectful, damaging things that could ever be iterated to a person with a TBI. 

For the longest time, I heard those words come from someone in my immediate family every day. They have no idea how much that hurt me. I did not develop depression after my accident, but it made me think that I was less important than I used to be in people's eyes.

I am aware that my personality has changed. Many relationships have been affected, including loved ones, especially my mother. Some family members even said during a discussion with me, "I wish you'd have died in that car accident". In some ways, I feel that I did. 

Although this tragic event happened, I am the only person to graduate (or go to) college, I have a wife and kids, as well as am the most successful person ever in my family. That being said, it feels like I would be more prized to the people who are supposed to be most important to me. 

Tonight, my mother started to talk about me(my injury) like I wasn't even sitting beside her, as she usually does when we talk about that. I started talking to her and told her that she did not have the right to talk about me in that manner, because of her lack of understanding. I mentioned that she only "knew" someone who had a brain injury rather than "understand" it because she doesn't have to wake up with a TBI every day.

Was I wrong? I don't think so. To me, it's like me saying, " I am the only one who's allowed to beat my brother up," because he's MY brother. I am the only one allowed to beat me up over the changes my TBI has brought on, because it's MY TBI.

Yes, while I understand that she witnessed and experienced many hardships during and after my coma, she can only see the picture from one paradigm--from the outside looking in. Thank you for the support.

I have found myself to have experienced at least 90% of the things in this article, and I can for sure say that it is a challenging road. Nine years since the fact, I'm mostly recovered I'd say, but I think I have lost a ton of potential due to my very high potential prior to the incident.At times I appreciate life quite a bit more, but at times I still get very frustrated. I don't have a lot of friends now, although I did not have a great deal, maybe 6-8 prior, now I have about half as many. I'm glad this article was written.

My TBI is permanent. Yes, I have improved over the years, but I still have a TBI. And no, this isn't a choice, so people, please stop telling me to get over it. Please stop telling me that if I change my thoughts, my TBI will go away, and I'll live happily ever after. Know that I struggle almost every moment of every day. I'm terribly depressed, so please stop telling me to look at all the wonderful things in my life, "how could you possibly be depressed?" I'm grateful for my life, my family and friends. But I'm alone. In addition to a TBI, I suffer with chronic pain, constant, unrelenting pain. I isolate myself so I don't make you feel uncomfortable. What I really need is for you to believe me! I'm not lazy. I'm not stupid. I have problems with my memory. It's useless.

HELLO MY NAME IS BRANDI HOOVER

I LIVE IN MORENCI, MICHIGAN.

IN MARCH OF 2012 I STARTED A NEW FACTORY JOB IN OHIO. I THOUGH I NEEDED A CHARGE IN WORK BECAUSE  FOR THE LAST 12 YEAR I WORK IN HEALTH CARE. WELL ANY WAY  I FELT BURNED OUT WORK IN HEALTH CARE. SO I WANTED SOMETHING NEW, DIFFERENT.

THERE WAS A COMPANY IN OHIO THAT WAS HIRING FOR OHIO FACTORYS SO MY HUSBAND AND MY SELF APPLIED AND (NEVER THOUGHT  I WOULD GO THUR WHAT I HAD TO) WE GOT HIRED AT PLACE IN THE NORTH OF OHIO (SORRY CANT GAVE  NAMES) THAT WAS A VERY SMALL FACTORY WITH NO MORE THEN 30 PEOPLE EMPLOYED THERE.

THIS COMPANY NEVER GAVE US ANY SAFE GEAR OR RULE OR IN THING. THEY JUST TREATED  US LIKE  WE BEEN THERE FOR YEARS. AS HE DID THAT I WAS LEANED OVER TO PICK UP A PART TO TRY TO FIGURE OUT WHAT I NEED TO DO.

AS I GOT UP ONE MORNING AT 5:00AM TO START OUR 3RD DAY ON THE JOB.

THEY PLACED ME ON A TAPPER PRESS THAT WAS PLACED AT THE VERY FIRST FRONT OF THE SHOP WHERE I WAS WORKING BY MYSELF EVERY ONE ELSE WAS AT THE BACK OF THE SHOP. LET ME REMINDED YOU I HAVE NEVER RAN ONE BEFORE IN MY LIFE. HE TOOK ME OVER TO IT AND THE SUPPERVIOR  PLACE A PART IN THE PRESS LIKE HE DONE IT A MILLION TIME BEFORE, HE DID IT SO FAST I DIDN’T EVEN SEE WHERE HE PUT IT OR HOW HE EVEN RAN THE PART,  AND WORK AWAY.

NEVER ONCE DID THEY EVER TELL ME TO PULL/TIE  MY HAIR UP OR ANY THING. MY HAIR WAS VERY  LONG PASSED MY BUTT AND I WAS WEARING IT DOWN THAT AT WORK NEED THINK OF WHAT WOULD/COULD HAPPEN.(THE NIGHTMARE FROM HELL)DID HAPPEN TO ME  AS SOME ONE WALKED UP BEHIND ME AND FLIP THE FAN TO ON. THE FAN BLOW MY HAIR RIGHT IN TO THE PRESS AND THE PRESS GRABED MY HAIR SLAMIMG MY HEAD RIGHT IN THE PRESS.AS IT WAS GRABING/RIPPING MORE OF MY HAIR IT WAS SLAMMING MY HEAD EVERYWHERE IT COULD.

IT HAD NO E-STOP SO I HAD NO WAY TO TURN THE MACHINE  OFF OR ANYTHING, AND NO ONE AROUND ME  TO HELP ME. I THOUGHT  I WAS A GONE THAT WAS THE WAY I WAS GOING TO DIE. I TRIED EVERYTHING POSSIBLE  THAT I COULD TO GET FREE BUT IT JUST KEPT SCALPING ME MORE AND MORE ALL I COULD THINK ABOUT WAS MY KIDS AND MY HUSBAND  I WAS I SCREAM AND BEGGED GOD TO LET ME HOLD/KISS MY CHILDREN ONE MORE TIME FOR 7-10 MIN BEFORE ANY ONE EVEN HEARD ME FINALLY THIS 19YEAR KID CAME AND UNPLUG THE PRESS FROM THE WALL 10FT BEHIND THE PRESS.

FINALLY AFTER ABOUT 12 MIN THE SUPERVISOR AND TEAMLEADER CAME TO HELP ME. AFTER THEY GOT ME FREE FROM THE PRESS THE MADE ME GO IN THE OFFICE AND FILL OUT REPORT LET ME REMINDED YOU I WAS SCALP 80% OF MY HEAD BLEED POURING OUT MY HEAD ALL OVER, I COULDNT SEE THE BLOOD WAS IN MY EYES. I WAS IN VERY BAD SHOCK DIDN’T KNOW WHAT I WAS DOING I PROBBLY COULDN’T EVEN TELL YOU MY NAME. ALL I COULD DO WAS BEG THEM TO GET MY HUSBAND BUT THEY TOLD ME I HAD TO GET THE REPORT DONE FIRST. I TOLD THEM I CANT  I NEED MY HUSBAND AND A DOCTOR FAST. SO THEY WENT AND GOT MY HUSBAND AND ALL I COULD SAY TO HIM PLEASE HELP ME THEY ARE HERE TO TAKE ME HOME (HEAVEN) THAT I NEED TO GO WITH THEM NOW (I DON’T REMINBER ANY OF IT) SO HE TOLD THE SUPERVISOR HE NEED TO GET ME TO THE HOSPITAL THEY TOLD HIM NO  THAT  HE NEED  TO GET BACK TO WORK. WE NEED TO MONEY WE HAVE 3 KIDS AND COULD LOSE THE JOB WE NEED IT TO FEED OUR CHILDREN. HE THOUGHT THEY WOULD CALL 911 AND HE’LL MEET ME THAT AFTER HE GOT HIS  PART RAN, BUT THEY DIDN’T THEY MADE ME DRIVE MYSELF TO A HOSPITAL THAT I NEVER EVEN BEEN TO BEFORE IN MY LIFE AND THEY SAID I REFUSED TO HAVE THEM CALL 911 TO TAKE ME TO THE LOCAL HOSPITAL THAT I WOULD DRIVE MY SELF THERE (REALLY) I COULD EVEN TELL U WHO I WAS, LET LONE  I HAD SO MUCH  BRAIN INJURY  I COULDN’T EVEN SAY MORE THEM 2WORDS AT A TIME.

BUT I DROVE MY SELF TO A HOSPITAL THAT I HAD NO CLUE WHERE  IT WAS OR HOW  I  EVEN GOT THERE  BUT I  HAD SOME ANGLES THAT SHOW ME THE WAY I GUESS  (IT THE ONLY WAY I COULD THINK HOW I GOT TO THE HOSPITAL THAT MORNING) AS I AM DRIVING MYSELF THERE THEY  GO BACK AND TELL MY HUSBAND I REFUSED AND TOOK OFF FOR THE HOSPITAL  MYSELF. THEN HE  LIKE DON’T WORRY I HAD THE TEAM LEADER FOLLOW HER THERE. MY HUSBAND LIKE UR JOKE RIGHT AND HE LIKE NO WHY WOULD I EVEN JOKE ABOUT THAT. MY HUSBAND BLOW UP TELLING HIM YOU LET HER DRIVE HER SELF THERE HE LIKE SHE REFUSED. NEEDLESS TO SAY MY HUSBAND TOOK OFF WALKING TO THE HOSPITAL BECAUSE I HAD THE CAR.

ANYWAY LONG STORY SHORT I SUFFERED WITH

SCALP LACERATION, 80%  HAIR AVULSION, CLOSED HEAD INJURY, POSTTRAUMATIC STRESS DIS, MAYOR DEPRESSION, MAJORS HEADACHES ( I DON’T THINK A MAJOR HEADACH EXPLAINS OR EVEN COMES ANY WHERE CLOSE TO WHAT I GO THUR ON A DAILY BASIC AS I LIKE TO CALL THEM MAJOR BRAIN PAIN) THAT I FEEL ON A DAILY BASIC,NECK PAIN THE JUST ACHES. I CANT GET OUT BED FOR DAYS, ALL I DO IS CRY, YELL,THROW THING. I CANT HELP IT I PRAY TO GOD EVER DAY TO TAKE ME HOME EVER MORNING THAT I OPEN MY EYE, I DON’T WANT TO LIVE ANYMORE I CANT TAKE THE FLASHBACK,PAIN,NIGHTMARE I COULD GO ON AND ON BUT I WONT.

I NEED HELP!!!!!!!!. I FEEL LIKE NOONE WILL HELP ME, I HAVE NO WHERE TO TURN ANYMORE. NOONE UNDERSTAND I FEEL LIKE EVERY THINKS I AM A NUT JOB I HAVE LOST IT. ALL MY FAMILY TURNED THERE BACKS ON ME WHEN I NEED THEM THE MOST I ALL WAY THOUGHT WE HAD THE CLOSE FAMILY EVER. (NOT NO MORE THEY HAVE TALK TO ME SEEN THE INJURY) THEY THINK I HAVE LOST IT. MY HUSBAND CANT WORK BECAUSE I AM ALL TRY TO FIND WAY TO HURT/KILL MYSELF OR SCARED I BURN THE HOUSE DOWN BECAUSE I TRY TO COOK BUT WALK WAY AND WITH ME FORGETTING WHAT I AM DOING I FORGET ABOUT THE FOOD THAT I COOKING (I  CAUGHT  KITCHEN ON FIRE 3 TIME NOW) IT HAS ENDED US HOMELESS 3 TIME NOW SINCE THE INJURY I GET A WORKER COMP BUT I SEEM LIKE THEY SEND ME MY CHECK WHEN THEY WANT SO I CANT COUNT A DAY THAT ILL GET ON. I AM IN REALLY IN NEED OF HELP IS THERE ANYONE THAT CAN TELL ME HOW I CAN GET SOME SUPPORT,HELP,ASSISTANCE, IF THERE IS ANY THING OUT THERE LIKE THAT

bobandbrandih@gmail.com

Hi i have injury from when i was 4or 5 im 35 i don't know much about my frontal lobe injury but i sure can feel my thinking stops and cant get passed it.what i just read was allmost bang on. One sec lost thought........ Enyway i forget what else i was going to put😞

I suffered TBI 10 yrs ago. I was already disabled from fibromyalgia, chronic fatigue, some immune system issues and had a crazy fall. The impact was so hard, I bounced around like a pinball. Although I don't remember it, I had injuries on several parts of head and broke my neck. I have post spinal fusion failure, lost most sense of taste &smell, it triggered narcolepsy (that's a WHOLE OTHER issue),global cranial ischemia, post spinal fusion failure, bulging, protruding & degenerating discs, arthritis, and lots of inflammation in my spine. Also I suffer from depression, anxiety, aphasia, I am in so much pain I spend close to 90% of my life in bed. It hurts SOOO badly just to hold my head up, I end up crying hysterically in bed for hours. I have these 'spells' when I am up and about where my head will get sharp pain and I lose my hearing and vision and cannot hold my head up and I have to just lay down on the floor - no matter where I am. I have had a HORRIBLE migraine headache (which I never had before the TBI ) for almost 6 months straight now EVERY SINGLE DAY. I HAVE NOT HAD A SECOND WITHOUT PAIN SINCE I REGAINED CONSCIOUSNESS THE DAY OF THE TBI. I am not old, but I no longer have a social life and I used to travel the world and had an extremely exciting and successful career. Now. I don't I don't understand HOW my WONDERFUL fiancé still puts up with me !!!! Bless his beautiful heart! My mom has to take care of me like she did when I was a child, because I can't even fix my own meals most of the time nor can I get myself to the doctor. Stumbling upon this website, after just discovering I've got global ischemia is like a message from God. I feel so so alone. Although they try, no one understands what this is like.

I just hope to be me again.

I've had 8 brain surgeries from a ruptured aneurysm and I can say very one of these is true!!

I am a 12 year survivor, at least 2 to 3 years after 90% of this article was true. Now the only problem I have is headaches, but no limitations.. We are all different in how severe our anuerysm was, and how our bodies and mind were affected. I am now doing well, but the first few years were very difficult and a constant struggle. It will get better, have patience  with yourself, and keep moving forward. You survived for a Reason....

Hello again: I have lived with mine for 'going on 38yrs', and in 1977 it was basically UNHEARD OF to survive what I went through, or so I am told. I made the best of a 32day coma after a head-on collission and have made a few observations along the way about how to deal with one of these. DO NOT GET TOO HOT FOR TOO LONG, that is not good. A wet rag on back of the neck works well in keeping you cool

Thankyou for this list! could I add one.

Please try to have my back and support me when my limitations are embarrassing. DON'T LET ME WALK AROUND ALL DAY WITH MY FLY UNDONE. When I have a blank look at the person who has just walked up to me please use their name in a sentence, in case I can't recall it. If you see me struggling to carry a plate of food through a crowded room I probably would appreciate an offer of assistance.When you set up a buffet table leave spaces whereI can set down my plate while I fill it. It is often difficult to carry a plate with one hand while filling it with the other.

I'm a TBI survivor of 4 years and I'm 25 years old and i wanted to tell parents out there with a child with a brain injury is give them space and listen to how there feeling. I know its hard to understand what there going through, they have to learn how to live again and its hard. My biggest advise would be is knowing when to push and moviate and when to back off and just let them be and have space to breathe.  

My Son suffers with all these things daily! People have no idea unless they've experienced it 1st hand. We continue to encourage and support him! He truly is our Hero!

I have never read something so true, I can relate to most of them.

I hit my head/snapped neck with force then snapped neck again a short time later. Migraines started, then memory loss, then no capacity for stress and ?depression? (didn't seem like depression). Lost recall of the TBIan it wasn't until the head injury was identified two+ years in, that any tests were done. MRI showed some brain damage. The medical community needs to run these tests immediately rather than prescribing meds and sending people on their way.

I had a TBI 5 months ago and am a survivor.  After reading this, I had tears in my eyes because I keep trying the best I can and people don't understand. I am 17 and recovering. It is long and hard. I want to be who I used to be. I am such a different person now.  it is so difficult to accept this. I try to forget about my injury but I am reminded everyday of it. How do you get through this and be the person you want to be? I love this and am glad that survivors are sharing their stories because I now know I am not alone in this difficult journey of recovery!

I broke my Head in 2012 and got a TBI. Almost 6 months later I was tired of being tired and had to try a go back to work. So I did and things went ok for a few months, then I fell off a ladder and had 2 more surgeries. Now this day/today I still push myself and have just realized I am only setting myself back. I still need to heal. If you are like me you are not the type whom likes doctors, boredom, or feeling lazy, so you try and push forward way to hard... well don't, because you are only going to en up hurting yourself in other ways.

                                                                   JLB    2014

This article is great!  I suffered a closed head injury about 30 years ago.  I have no memory of my accident or 6 months before or 6 months afterward.  But I can relate with every thing in this article.  There is so much still, to be learned about the amazing brain.  I look forward to reading more of this in the future.

This is awesome. Like someone in the chat mentioned, this should be a discharge requirement that comes with all TBI patients. All of you can probably understand what it feels like to not be understood, especially by family. Someone not understanding these things, especially while you are recovering, keeps you from understanding yourself. Thank you for your post.

For the commenter below:  I had a TBI two years ago.  I lost my sense of smell, and it has not returned.  My doctor told me that it if wasn't back after six months, the odds are strong that it would never return.  Loss of smell is common with TBIs.

My guess is that, if you are like me, you can still taste things but the sense is much weakened.  That's because the sense of smell heavily influences what we taste.  Without smell, I can still taste a few stronger things (like spices and mint) but most things have no flavor.  Food enjoyment is mostly about texture.

I just have to say thank you for this. It took me a year to realize something was wrong with me (after two car accidents within two weeks of each other)...getting fired for the first time and plummeting from a 4.0 in my Master degree to failing didn't seem to do it. Once I did the real struggle started...trying to pinpoint what is going on with me and my challenges. I research when I can't explain to others my challenges. I am so glad I found this, as I will share with family. Aside from me struggling to figure out what was wrong the next challenges was abc continues to be friends and family...because I "look fine and seem fine" in simple conversations. What I say to that person is that someone with my former career, continuing education as a future doctoral student and financial security doesn't just decide one day to throw it all away for no reason. To file bankruptcy. To lose my home in foreclosure. To lose my Master's degree (I had one class left) and my acceptance into a doctoral program. This hopefully will help family understand further. Thank you so much.

Eight years and a few months ago I had my skull screwed back together after the removal of a GBM. They got it all and it hasn't recurred, bucking all the odds and making me a medical miracle. That's great, but the combination of standard of care leaves patients with a new and different existence. Behavioral modification and cognitive impairment are expected from any brain surgery, and most TBIs. I can only surmise that my improved functioning is a product of my continuous stimulating of my endocannabinoid system, and also includes neuro protective and neuro genetic qualities. I'm still doing the PA at high school basketball games, memorizing names as I call the action. That miraculous plant has been falsely demonized our entire lives and recognizing when you're wrong is a difficult task, but cannabis and humans have a bond that is unmistakable if you're willing to look into it with an open mind.

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