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

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.

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.

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.

My nephew had a TBI in 2002. he lost his sense of smell and taste. Taste returned in the first year.Sadly, he still has no sense of smell.It's just one example but you asked...pray that you have a better outcome.

Hi to all. Just wanna know if anybody in this forum who had TBI and lost their sense of smell and sense of taste??? Did you get them back? What treatment did you get? Please let me know. I had TBI 6 months ago and I'm still waiting for my senses to get back. My doctors don't have any clue and don't offer any hope.

My TBI was 8 yrs ago - run over by a drunk driver at the airport.  

Your comments have made me feel like I am not alone.  I will never meet you nor speak to you but you have probably saved me.

I lost me - I know I lost me and I want ME back!  Before the accident, picture your stereotypical sorority girl - but nice :-) - doing volunteer work at the orphanage, working full time, organizing campus wide fund raiser, and more and still pulling down a 3.8 in college (engineering).  I was everyone's friend because I LOVED people.  I loved being around them, I loved talking to strangers and hearing their life stories and learning lessons to use in my own.  I hugged everyone!  You either loved me or hated me because I was that annoying perky happy person but at least I tempered it with a very sarcastic sense of humor.

Fast forward to marriage and kids.  Still worked 60 - 70 hours a week (global team so all hours of the night and day), was homeroom mom for two kids, GS leader for two troops, GS Council, basketball team mom, soccer team mom,  and more all at the time of the accident.  And then, because some drunk decided to drive - in reverse - and drag me 18 ft, it was all over.

For six months, I couldn't sleep in any position but sitting up in a recliner due to the various injuries.  But more importantly, I couldn't stand for anyone to touch me, even my kids.  At first, I thought it was from the pain (broken ribs) but it got worse.  I couldn't remember anything and I just wanted everyone to go away and leave me alone.

I was diagnosed finally and took all the tests.  My short term memory is really bad.  I have lost entire chunks of my life - I don't remember my children's first steps or first words.  They will say "remember when we.... " and I have to just smile because I haven't a clue what they are talking about.

And people... oh, I don't like people in person.  I can still talk to you on the internet and thank God that I am "home office" so that I can continue to work, otherwise, I would be on disability.  I can handle being around friends for maybe an hour and then I have to walk away for a while.  I can't go to Target or a football game unless it is a good day.  I deal better "in crowds" than I do say Parent Sports team meetings because I have to deal one on one and they still want me to organize everything or be perky and I JUST CAN'T DO IT.

My husband was supportive for the first several years but now thinks I am faking it.  The latest round of medication for my migraines and other drugs has helped me to gain 40 lbs.  The shots for my permanently damaged knee have basically stopped working and I can't sleep or get comfortable from the pain.

He has started to call me stupid and make comments like "you really are brain damaged, aren't you?" in a vicious manner.  I can never do enough to make people happy and I can't be who I was and want to be again.  He says I am a fat, disgusting crazy idiot.  Happy 25th anniversary honey - you should be committed!

We/I bought a farm last year - 30 acres in the middle of nowhere - 12 hrs from our main house.  It was "his idea" although now he resents if I go there but all I want to do is just run away.  Stay at my farm and not see people.  Live without stress, but I can't because of my children.

I AM NOT STUPID!  I AM NOT CRAZY! AND I WANT ME BACK!

And if I can't have the old me, then I want to be left alone so that can find peace with the "new me" because apparently, we are going to be stuck with each other for the rest of our lives...

ps... sorry I ranted but I feel so alone...

Wow, I just stared directly into the mirror it seems for the first time in 12 years almost to the day. You hit the nail on head. OMG, I cannot UNread this to avoid the reality of it, it's just so overwhelming. How can I say I've made it this far? I simply can't run away from myself, so, so far, I guess my future will present itself. It just depends on "where I stand in governments hands" for where it is I will wind up. Got "in line" for housing years ago... "my future is in general population line up."

I accidentally come across this site and couldn't belieave how right on this site is.  I am the mom of a 16 year old daughter who has a tbi. She had a horse back riding accident 3 years ago and is really struggling.  She is on meds for depression, and anxiety of all kinds.  It seems like we are taking her to the doctor all the time, always says she is sick and most of the time they do find something wrong with her mostly this year sinus infections.  Anyways this isn't easy alot of people don't understand brain injuries.  She is the first one they have seen that was this bad.  Oh, at first they did everything they could for her academically from getting her a tutor to just about anything, well now it's been 3 years and they think she has healed.   She is on an I.E.P. , if she misses so many school days in a quarter they make her type reports, that's all she needs more more to do when she can't hardly finish her home work.  Even her many doctor appointments count againt her.  My husband and i have gone to meeting upon meetings trying to talk them into puting it into her I.E.P. that because of her disability and needing these doctors appointments it shouldn't count against her, well they cut the reports in half but it's still a struggle and they will not do as we ask.  Acouple of years ago my daughter had a break down at the school and she ended up in a childrens mental hospital for 2 weeks. I do realize i don't push her enough worried she will fall apart again but i am not sure how much i can push her without this happening.  She can go to school for so many days then she says she is sick or her head hurts so i call the school and try to explain but they don't get it.  Sometimes i don't get it!  The doctor at the Psychiatric hospital told my husband and I that the child that got hurt that day is never going to be the same, like that person died and now she is trying to find the new person.

Thank you for listening.....

Just like so many others have said, this is spot on for TBI survivors.  I am 13.5 years out and still trying too hard and making myself ill.  So it's a great reminder to myself that although I have always just wanted my life back it is not as simple as that.  Thank you for this fabulous article.

This is a wonderful piece of information to pass along to family and friends. I suffered a traumatic brain injury in 2003 as a result of an automobile accident. The accident was catastrophic and I was in a coma for 6 days. 11 years later I am doing well but suffer everyday living with a brain injury. What was mentioned in this article I experience most of the time. Trying to explain it to people who don't get it is very hard. Thank heavens for websites like this. Your are a blessing.

All I can ask is, "Will I ever be the same?"  The guilt, the shame and as the source of constant disappointment to everyone who knows--or knew--me is relentless, Three years already, and it's still just shadows, cinders of a person I once used to know. God, I am so tired...