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

Actually, I am long time Traumatic brain injury victim since 1987 , I was 11 years old at that time. I hope that I died at this day. I had a fracture in my skull, broken skull. and i was unconscious for 7 hours then before i wake up they give me a medicine to keep sleeping until the doctor clean the blood before reaching the brain. the accident had effected the left side of my brain. just I was walking on the pavement near my school in saudi arabia. and a car hit me , hit traffic light and hit the wall. i am 40 years old now but i feel like 90 years old with no power due to the medication it take to be able to function like a human.

Wow. So reading these stories are like watching a trailer for a movie about the last 7 months of my life. I am Amanda Sowell and I was in a traumatic car wreck in August of 2015 we swerved a deer and in result over corrected and hit a tree and ever though the airbag worked and the seatbelt somehow I still tryed to exit out of the windshield. I'm not good at that. Any way I had a very large gash in my head and 2 anuerisms , fractured jaw in 4 places , and the injuries keep coming. Now that my brain doesn't hurt all these other things are hurting. Go figure. I don't even remember the first 3-4 months of being home. Because I had no insurance they rushed me out of the door of the hospital after 4 short days. I wasn't ready and neither was my family. Especially my 3 boys 2 in which have autism. This is a complete 360 of my life prior to my accident. I'm very strong willed , stubborn and self reliant. I had to be for my boys. That's definitely changed. They've helped me through so much and they are my inspiration every day to try a little harder. Haha the brain operates everything. The memory loss and confusion and physical and mental fatigue are exhausting. The kind of exhaustion I never knew till now. And the emotional ups and downs are as well as the mood swings and the sensory overload , don't even want to get started on that. It would be so easy to give up but that's not an option for me, I can't. I've endured all this with nothing more than the love of my God , my family and ibuprofen. No physical or occupational therapy or counseling just faith. I know my journeys no where near over and that's ok. I'll get there. I also have third nerve palsy as a result of the bleeding on my brain which is basically an injury to the third cranial nerve that controls your eye along with some issues with partial paralyzation of the right side of my body. New injuries keep popping up so like I said I'm not done. I was a nurse and kept the elderly that had Alzheimer's and 2 of my boys are autistic. I completely understand what they are going through now. I can totally relate. With every story I read I feel emotionally drawn to each and every one of you. Let's keep writing and telling our stories. We are part of each other's recovery process. I personally thank each and everyone of you for sharing. And I am praying for us all.

I am 23 years post tbi and for years I counted on things getting better as time healed wounds. This simply doesn't happen with injuries as severe as mine and IV accepted the fact that I get worse with each passing year, but I learn to handle it better. The hardest part is dealing with other people. Hearing their comments like "you look fine" or "u don't seem disabled". Or when you try to explain self-hate or self-harm to them. First, if their still around after telling them about it, you've made a good start! I find most people leave n never look back. The ones who actually stay n try to understand but, of course, can't, I sum it up by telling them "its ok. I'm documented, certified crazy..." They seem to accept that as a reasonable explanation.😉 I just have to say I never in a million years knew the human body and mind could put up with so much pain, torture, hopelessness, loneliness, and fear as mine has. God made us stronger than I ever knew. I died 5 times that day of my accident, and the good Lord brought me back each and every time, so I must be here for some reason. Maybe to bring these words to you... God bless and keep you all. Never, ever give up. God is good.. Thanks for listening.

Living with a brain injury is like putting a kaleidoscope over your eyes getting in a car with a blind driver with the throttle stuck all the way on staying like that for years and then trying to cross a busy inter section in rush hour traffic.

Dear March 30th, first, know that your loved one is very fortunate to have your support, it can make all the difference.  If your loved one has not had speech & language or cognitive therapy, that is the best place to start, not only for help  with speech & language skills but also with memory & organization.  Some other suggestions would be to try to get her involved in a hobby she has or even had as a child. Her personal interest might help motivate her.  You can also try playing board games or working on something like jig saw puzzles together.  The fun, relaxed atmosphere might stimulate conversation.  Something else to try could be exposure to pets or animals.  People often talk more to animals than pets.  Last but not least, just be patient with her when she does speak, allowing her to take the time she needs to make the connections in her brain and find her words, unless of course she asks for help.  It will help her build confidence and her language skills.  She can also use all of the positive comments and encouragement you can give her, without sounding condescending.  I hope this is helpful.  Blessings, Barbara

Ok I have always wanted to give back and yes I truly am now! At 18 I was in a car accident and suffered a TBI, I was in a coma for about 2 1/2 weeks. My recovery was slow, very sad, alone a lot thank God for my parents. I always had goals and dream. I wanted to walk, then run then go to college with the medical professionals saying I would be lucky to be able to stay by myself.  Today I am 45 with 2 awesome and very intelligent daughters.  I have 2 masters degree with the most recent and my true passion Rehabilitation Counseling. I work as an advocate helping folks with disabilities receiving what their plan says and starting to counsel privately. I also teach spinning (indoor bicycling) 2 days a week and work out 5-6 days a week. I umpire baseball and softball in the spring and summer.  I will say I do NOT have enough time or space to list all the times I have failed or been fired from jobs.  With that being said I would never stop, I always looked for what I could do or try next after losing a job or failing at some event.  I had a great support team with my parents and brothers.  However like I said before I am 45 and only the last 3 years have been truly the best years since my TBI.  I wake up everyday looking forward to the day and excited.  I never thought I would ever be this happy again but after all the hard work and finally finding work that I love and embrace and they embrace me I can truly say my TBI is past tense.  I am open to communicating or talking to anyone that reads this letter and wants to chat. Here is my email charlesbrose@msn.com  Thanks,

Charles Rose

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.

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

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

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.

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

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?

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.

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. 

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 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

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.

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.

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.

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 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.

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

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.