Lost & Found: What Brain Injury Survivors Want You to Know

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.

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.

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 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

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

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 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.

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.

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

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.

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..

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

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

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

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.

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

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

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

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.  

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

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!

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.