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

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Great article and comments!  I can relate to many of them.  I acquired a severe traumatic brain injury in 2004 from a car accident.  At that time I had 4 young children (6 months, 5, 10 and 11), a new husband, a whole new life in a different state when it suddenly spiraled completely out of control.  It's taken me almost 13 years but I've learned through trial and error how to bounce back and achieve success.  I'm walking with a cane and learning to walk alone after having to use mostly a wheelchair since the accident.  Recovery CAN and does happen well after the initial one to two years.  Learn from my mistake.  Believe in yourself and NEVER GIVE UP!!

Yes! Especially the extra noise. I can't filter it anymore. Nor can I determine the difference between real questions and rhetorical ones. Don't assume we are a-ok although we would love to be.

I ended up with some aphasia and when tired I need help remembering words. My granddaughter helps me and tells people she can speak "grandma".

I lost my job of 24 yrs because of my "health.' I think that's crazy after all I gave them over the years! Anyway, I am not the same anymore. All I did was fall and split my head open and had 12 staples to close the wound. After that I truly thought I would be fine. I'm such a hardheaded woman! This was 4 months ago and I live with headaches, nausea, and vomiting and the worst is my balance and that is why I was let go from job  I became a liability. As much as I love the owner of the restaurant that I worked at ..my lawyer is considering a second lawsuit!

I am a mom fighting the fight for a son but a little late to this party. My son (now 22) had more than a handful of concussions as a child - all mild. We just didn't know. Signs of their effects were so subtle we missed them over the years. Only smarter now because we are now caregivers to a shaken baby survivor. Unfortunately, smarter too late to save him from drug abuse, which will soon land him in jail. Looking back it is so clear... the slow detachment from enjoyable things, the smiles that came less and less. A detachment disorder from himself also followed, where he said he felt like he was not experiencing things first hand but as an observer. Lack of emotion. One major surgery during this time pushed him over the edge. Brain injuries and opiates does not equal forward motion. When you are faced with brain injuries and drug abuse you struggle to know which approach will help more.  You always hear "do not enable", but how can that apply when there is a brain injury present? I don't want to use any of this as excuses but just to better understand what landed us here in this painful journey. He lost himself so young. He will need to fight for himself. I pray he remembers how.

Understand your TBI, nourish your brain, and work it. As brain surgeries evolve many are lost with the daunting task of recovery. It's a holistic approach your entire body needs .

To all of my loved ones: please, please let me sleep. I have to sleep as much as possible.

so very clearly describes issues since my injury over 20 years ago. I do very well, but when I don't I REALLY don't. I (through some ironic and well timed opportunity), have been working full time, but it is so very overwhelming and when I get pushed to the limit, things crumble. I am alone and it is a terrible feeling to feel like you are not able to handle your life. If works is going well, my life isn't. I wish I knew of an ap for this.. but the article...these descritptions...they help. At least I know I am not loosing my mind and that I am not actually alone. That is something

Wow this is....exactly what I'm feeling and I think I need to show this to people. I want to stop having this happen though it's unbearable.

I had a severe TBI post 30 years. Still right side weakness, leg and arm. Migraines and seizure disorder.  As most here seem to know, I look so normal that most people don't understand that I am not and I experience most of what this article describes.  Family does not understand, things like I drive an extra 5 miles to go to a store that has no one in it, so I can shop for food.  If it gets crowded, I can't be there and I leave.  In recent years it seems and this new, that I can get angry easily for no apparent reason so I sought out counseling with a specialist who knows brain injuries and long term effects.  I get up every morning and try to keep a positive attitude towards life and towards each day as each day comes, even though I know my brain seems to be deteriorating so many years after the injury.

It has been five years since my accident. What an excellent description. This sounds like me explaining how I feel. Hard to believe it's someone else's words.

This article is exactly what I've been going through for five years. I will put this into the hands of my family and friends because it explains things better than I ever could. I have leukemia and had to have chemo and I have never recovered full brain function since. I am unable to work because of it. I am thankful for the article and describing what I go through everyday.

FINALLY someone gets it! Now if we could just get people around us educated. Love that you have stated me so well. Thank You!

I have been off drugs and alcohol for many years, yet my family members still accuse me of being on drugs, I suffer from brain damage, which in turn allows my brain to slow down and my speech to become slurred. Some times my brain doesn't allow my thinking to become understanding to others. Because I am an x drug user, some times being called a drug addict, brings back memories of when I use to use. And Temp's me to use again. I would expect more from my family for moral support, than to keep being accused or asked am I on drugs. It is no help to have old memories shoved in my face from who I use to be. Yes, I used drugs and drank more than five years ago. If you really want to support me, you should pick up the phone and tell me you love me and are there for me. You should also know that slurred speech come from not just medication, but brain damage. Support is not to belittle or to shove an ex drug addict's addiction from their past life up again. It is a proven fact, the fastest to make an ex addict relapse again, is throwing their old drug habits back at them. It is also a fact, that when people or family member do so, most addict members commit suicide because they feel a sense of worthless and do not believe they are somebody or even loved by anybody.

I Had Brain surgery in 2012 and although the surgery and recovery seemed to go very well. I have noticed major differences in my thought process and my temperament. I don't tell anyone how I feel but I struggle daily just to stay on track with my thoughts and my work, my life etc. I have always pushed myself to get through the worst of things. I can't say I had the support I needed during my recovery and I think that may be partially to blame for the issues I am having now. I have read that stress and trauma can effect the way your brain recovers, It is 2016 and I am still trying to get back to normal.

Hi there i am a brain injury survivor. I had a cerebral hemorrhage 7 years ago this month. I was in a coma for 6 weeks. 2 of them drug induced because I crashed when they tried to wake me. I had 30% chance of recovery and my left side stopped working all together. I am posting this just to show there is hope. I am now back at work full time. Still have left sided weakness, but I am alive! I am not the same person I was before my brain injury but i am getting there. Thanks to Kings College Hospital in London and Neuro rehab in Canterbury Hospital. I hope this helps someone out there to not give up. Mandy

Seven years ago I suffered an incident. This is the best description I have ever seen. Boy I wish I had this all along, written on every wall in my home.

Great article!  Shows the human side, rather than just focusing on the clinical side of this.  And at the same time, it informs the rest of us how it feels to go through the huge life changes that you face after TBI.

I can relate to what you're saying, because I face similar things, for a different reason... As a person who lives with the challenges that MS presents, I go through some of the same things that you mention.  I also know how hard it can be to explain it to someone who hasn't lived it, and has a hard time understanding how overwhelming it can be at times.

But take heart!  The more you work with a challenge, the less challenging it is.  And people around you will finally get it, and will be there for you.  One thing I learned from my experience is that it helps to take it one day at a time.  Sometimes it will be an hour, or a minute, or even a second at a time.  And that's ok; the important thing is to never give up. <3

This information fits my NMO issues 100%. Demylenation of the nerves in the brain n spinal cord.

Hang in there and support groups may help. As long as they are not pity parties.

I was brought to tears reading this. My mother suffered a brain injury back in 2000. I feel like such a jerk after reading this because, I know I've had unreasonable expectations. She was super mom once upon a time, juggling a job, kids, ball practice, cooking, and cleaning. I've been so selfish and unreasonable. She too gets angry when plans change or something is sprung on her. She often blows up and says extremely harsh things or acts out. Thank you so much...I needed this.

I am a 17 year survivor.  To look at me you would never know that I was in a coma for at least 3 days with a coma score of 3.   The only scars I have from the car accident are the ones I hide with my hair.  Therapist's prognosis was grim at the time of the accident, however I overcame many of the obstacles that they predicted I would have.  I returned to my life in 4 weeks and have been teaching ever since.

I have many lasting symptoms of TBI, but because my parents believed I had a full recovery, I discounted what I felt.  I forget names of my students and co workers.  I can not call words fluently.  Movies and books are no longer enjoyable because I don't remember them.  

It all came to a devastating blow when I hurt my Best Friend.  We had plans to spend time together.  She had to change the plans.  The change sent me into orbit.  I could not handle the change in plans and I was mean to her because of it.  I hurt someone that I love.  Spontaneity is so hard for me.  Change is hard for me.  I get mad so easily.  I say things I don't mean and find myself apologizing often.

I really think that I have a problem.  I have considered going to a support group.  Has anyone done this?  Would I fit in?  Would it help?  I am devastated and I think I need help.

This so true! A person can be in a total overload! And no one can see it! Except the person that is suffering! Sometimes a person can't stand the loudness of two or three people talking at once ! Or screaming! Or just someone not getting what the person that has the problem, is trying to say! So the person that needs your help just gets louder! Because they are trying to tell you something that will help them! And no one will lesson to that person! So it causes the patient to get hyper and overload! Which causes them to get nervous and disoriented! So that is not a healthy circumstance for the person that needs peace and quiet time!

I have not had brain surgery! But I am having issues with my brain wanting to work right! So I have been forgetful and wonder what I did with something! Or I just really have to think hard to remember! I am 71 years of age and this has came on me fast! I am seeing my Neurologist! And he is trying to help me! And sometimes I have to really think hard about things! I juts guess this is the new me! We shall find out soon! God bless all of you!! Delois

Thanks for sharing Andrew! Many times I feel like loosing my mind 😩 It may be too soon for me to be "normal", 6 weeks after brain tumor removal (endonasal). I look good outside 😜 But the head is messy lol All the best for you! Lee

I am posting this on hopes it helps someone see than light at the end of the tunnel. I was a boxer and a graduate student in a very competitive program when I had the head injury that was the straw that broke the camels back. It was a mild tbi, with a loss of consciousness. I was completely incapacitated for 6 months....then things started to get better. I am 1 year out and still have headaches, brain fatigue, anxiety, sensitivity to medications and changes in altitude or just everyday changes that normal people can handle, noise crowds and light bother me. However.....life is so much more manageable. I am feeling like i can start to see the light at the end of the tunnel. I scoured the web to see.."how long will this last?" and unfortunately it is much different for everyone but generally for a mild to moderate tbi symptoms start to get better after 1 year. :) lots of omega 3s and 6s (buy high-quality) , magnesium, good sleep schedule, NO SUBSTANCES (alcohol , mood altering drugs), and oddly enough, blackstrap mollasses, have helped tremendously. You may feel a lack of motivation and feel "lazy" let your teachers or co-workers/bosses know what has happened and that You Are recovering and intend to do your best to remain as productive as possible during recovery and they will hopefully approach the situation with a compassionate and understanding heart. I feel most fatigued when I am productive and working all day...but ironically at this stage I feel best when I force myself to work and do my studies as I feel most normal during these times even if it exacerbates those symptoms. Sometimes just getting through a work day helps me understand that I can function. Try to get out into the world for fun but give yourself a way out. Stick in social situations when you get those nasty symptoms as this will help your body learn coping mechanisms. I have been fortunate enough to learn these mechanisms and get well enough at the same time to be able to participate in these fun times again. Finally and most important .....EXERCISE. Exercise exacerbated my symptoms initially but research has shown that it reduces symptom timeframe as well as helps your carotid bodies regulate and manage blood flow to the brain better so you get less headaches and those weird out of body experiences when doing everyday activities. Many facilities Are running research studies that will let you participate in novel treatments for free. Craigs hospital in denver runs these. A simple google sesrch for this may change your life . with that i will stop rambling. Remember to love each other and yourself. Suicide is A fleeting thought and will pass with time. Find meaning in suffering. And learn to love the little battles won! Andrew

I believe these testimonies aught to be documented and be placed into the hands of every teacher/professor in the medical field, as well as into the hands of every practicing doctor/health care directive on the face of the earth. They need to know this.

This is like looking into my own soul.  I have thought probably every line of this article.  The words for me are lost at times.  I am often accused of being rude or mean sounding, even scary.  It is very difficult to explain to anyone what you are feeling and I too will be printing this out and let my family and people I interact with read it.

Long road for all.  I wish you all the best.  I am on year 3 of my tbi sustained from a car accident.

So glad I saw this post!! It's been 2 1/2 years since my accident and I still get frustrated trying to explain these things to people. This is a good way to show people what we go through and how we are trying to cope. I think the worst thing I hear from people is, You still are not back to work? Why, you look fine and you seem like your normal self?!? With the struggles pointed out here, are the main reasons I cannot do my job as dental assistant. But I am coping with what I have and take everyday as a new day and new achievements! Most of all it is good to have such a great family support (cheerleaders) in my corner who don't allow me to give up! Thanks again for this !

Thank you so much for taking everything I feel and do and putting into words that my friends and family can understand. Sending good thoughts and hope for a progressive recovery.

This is a amazing story and absolutely true. I had an Cerebral AVM removed from my Right Frontal lobe in January 2016. Since I can remember I had suffered from really bad headaches and chronic tiredness. After the surgery both has improved but now almost 5 month later - I am NOT feeling myself. Everything written here is so true and people, loved ones and family don't really understand the seriousness of the matter. Even at work, I just keep to myself and to what needs to be done. I am taking everything slowly and that is frustrating to myself. BUT I know that my brain is recovering and healing on it's own time. No need to rush! I'm still alive and have SO MUCH too be thankful for!!

Thank you. I have a Tbi from car accident two and a half years ago. My physical injuries are bad but not as bad as losing long time friends who say things like "you need to move on" and "you're fine). Absolutely no one understands me I'm on an island which is gradually shrinking

I am so happy I read your post..my 28 year old son had a stroke and brain bleed he had surgery and an AVM Removed from his brain..June 13 2015...what you wrote will help me to understand him much better...he is a single father with custody of his two children. ..He struggles so much since he can't read or write. ..and he wears out real easy...Now I understand him more...thanks

Thank you very much for your article.  Reading this has made me feel "normal"  in my world.   I am a survivor of ABI through surgery and concussions for over 25 years.  Wish more people had an opportunity to learn about associating with people like myself.  Thank you again.

I have been suffering from tbi since I was 2 and I am almost 40 now, it affects not just myself but my partner as well, even I admit I have some of the worst memory I have even heard about, a good example is my old work, I was there for over 4 years as a store manager at a pizza shop and to this day I can only make 3 by memory out of roughly 36 pizza's, Like a lot of people in my situation I worked around my problem but it's now to a point that it's out of control, after reading a few stories on here it's given me hope again and will seek further medical advice.

just know that my prayers are with everyone that has tbi I know the feeling I wrecked my truck and when the EMS found me I was fifteen ft from my truck i had brain surgery when I got to ER I was in ICU for two months I'm getting to go back to my job but every day is tough in many ways. If you're struggling with tbi then my thoughts and prayers are with you

Thank you to the group for putting together this list because this explains everything that I am feeling and going through that I couldn't put into words so my family and friends can understand what I'm going through. bless you all

This is my second comment only because I feel like I could meet you and relate to everything you have and are currently suffering from, because I could place myself in your place for each action and then wonder WHY? Sooo I quit wondering why and worked on acceptance of which I fight with each and every day, I PRAY A LOT if it wasn't for my spirituality my spirit would be broken and healing wouldn't be part of the process!

My name is Kristy I suffered a big Traumatic brain injury in 2014 it is 2016 and still things arise physically and mentally related to my injury. My children were 16 and 18 when it happened and my daughter who is 20 now has some compassion and care for me, there was an inbetween area she hated me thought I was faking. My son now 18 moved into his Grandmother and Grandfather's home and I think he hates me I want to help him and wondered if due to a parent's disability or injury there were supports to help for scholarships to anyone who knows I would appreciate any help with that or adjusting to the attitude change within people in my life I love my kids so much I shed tears every day due to their actions or thoughts given to me verbally my email jollyollylolly5@charter.net I will take any help

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.

My husband was in a Motorcycle accident back in August and also suffered a brain injury (TBI). Many of the things you said, sounds very much like him. He is still healing and is also looking for those who are or have been in the same situation. He has talked with a friend who has TBI and that seems to help but I truly wish I understood completely. No matter what I research or talk about with others, it's also very rough for me. I don't want to come off as though I'm not trying, I just do not understand completely enough to assure him and comfort him the right way even though I try. I know it's rough on all involved but the most important is the one who is dealing with it. I hope he sees this and is open to talk to others like you and hopefully we can all benefit from this.

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 have a severe tbi in 2002 and was in coma for a month, with many physical injuries. Through all my rehab, etc., I managed to start college and somehow through hard work, made it and ended with a masters degree. The problem is I feel forever LOST. My memory, still a problem, I get overwhelmed very easily, I have mood swings, no patience, frustrated, etc. Etc. The ways they say to cope, have not helped because I need a full time job to function in this world and live, how does one have a life with this disability? I never seem to find the answer and nobody truly gets how difficult it is. They really have no clue.

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.

Firstly, i'm sorry to hear about both your TBI & anything related to it. I also have a TBI caused by an underage drunk driver who was 2x over the limit, on the wrong side of the street & speeding as he struck my vehicle & drove straight into the left side of my body without touching his brakes (t-bone/min estimated speed@ +75mph). Idk how far away you are from the injury date & Idk if everyone has a similar situation regarding their initial TBI experience but I noticed how extremely impatient I was & how irritated I became during the first few seconds upon discharge of the hospital. I'm not sure when that lessened or if I've just learned to quickly remove myself frm the triggers as time went on, but it does get better/easier- as with all things.

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.

Hi there my name is Wendy Watt and i am still getting very angry and upset over the little things. It is hard knowing what I have been through and how hard it is to explain to people about having a head injury. I do not talk about it but i am getting there. I am a very hard person to live with as my husband will tell you and everyone that i have lived with. I am grateful for all the people that have stood by my side through the whole process. I still do not no why I have to live with it but I have to. I get a vary of questions about my scars that are on my face and I just say to them I was in an accident. I do not talk about it as it hurts me as I lost a really good friend.

Cheers and thanks for hearing my story if that is what you want to call it.

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

Hi, I have a loved one with brain damage I would like to know what I can do for her to help her with her memory and her speech because she doesn't talk at all but she can. Is there any way that I could help her with all this? Any help would be appreciated thank you she was in a car wreck also

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