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

Barbara J. Webster, Lash & Associates
Lost & Found: What Brain Injury Survivors Want You to Know

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Posted on BrainLine July 28, 2011

Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission. Click here for more information about the book.

Comments

Sorry Denny. It sounds like you have a lot to deal with. Sending you prayers and hugs.

The contusion of my brain resulted from a head-on automobile accident in 1975. The amnesia improved over the years but I occasionally have trouble with vocabulary recall, especially when tired. Severe double vision has improved somewhat after a total of 6 eye muscle surgeries, I have pretty good functional vision but read only with one eye at a time. The normal visual fusion reflex is gone and with it is stereoscopic, binocular vision. Still I completed a Master of Science degree in 1988 and will retire from a profession as a dietitian in a few years. I couldn't fly a plane but I did ride a motorcycle for years and still ride a bicycle and drive. I'm happily married to a nurse practitioner and I'm doing alright.

Hi
Am 31 and i had my concussion almost a year ago. Somebody hit me on my head i cant recall who it is. I had black out for more than 2 1/5 hr. when i woke up i was totally disoriented. I went to the doctor though they discharged me saying i have to rest after MRI and CT scans but the left part from my breast down is till now slightly numb. No headaches, at list non that i can remember but my eyes were seeing individually for the first week. My right hand and leg was very weak that i could not raise my hand and walking was hard that i have to walk slowly and make small steps else i will fall and my left ear was ringing really hard. I could not speak and make any sound loud. But it has all reduced now slowly, my ear still rings but not like before, i can speak just few words. I limb while walking now and my arm is still week i have to apply force or strength to do things and i my fingers shakes too. I want to know, am i alone on this? how long will it take me and will any of above mentioned symptom be permanent?

How long did yalls last for before y'all healed?

I'm exactly on that. How long did it take you to heal completely? It's hard to not have any electronics. Also, hard to be the oldest and have to go to bed 2 hours earlier than everyone else. 

I can relate to parts of so many stories on here, Denny especially. I was never actually told I have this but I do. Two and a half years ago I was backed into in parking lot and saw it coming. I have had short term memory loss and issues with different brain functions. In May of 2016 I was in two accidents that were twelve days apart. The first one happened as my daughter and I were stopped behind someone. We were struck from behind and pushed into the car in front of us. Twelve days later I was traveling with my husband at 55 mph when someone pulled out in our path. We ended up t-boning him. Along with all of my memory problems, I have difficulty speaking. I lose track of what I'm saying if interrupted, I can't fin words at times either. I suffer with headaches on the daily and neck pain. The neurosurgeon is conservatively trying to help my pain but I fear my memory issues are permanent. Reading everyone else's stories helps. My family doesn't get that these issues are what have changed me so much. I've gotten the comments too about how I look like I'm fine. The pain I deal with daily and accept. The hard part is the brain issues and no one understands what I'm dealing with. Thank you for letting me get my stuff out there. God luck to us all.

This is my last comment. Wife just told me filing for Divorce. Guess idea of being a caretaker not something she wants to take on. I still do everything myself. Just takes longer so not at that point yet. Cant get help cause have no insurance. I hope you all get better and keep up the good fight. CTE means I wont get better but I will continue to fight. Not much else to say. Good luck to you all.  Denny

Hi I have a tbi, from an assault at a bar in April 2008! My frontal lobe on the right side of head is dead, and the entire right side of my head is titanium mesh! I've been on disability for going on 7 yrs. Because they can't seem to get my seizures under control, but I totally agree with Denny about waking up THE MORNINGS HAVE BEEN HELL EVERY MORNING FOR A LONG TIME! !! Between the physical pain, and another thing he said "just trying to face another day like this"! This is also the first time I have reached out to try and talk about my injury! Good luck and God bless to all my surviving brothers and sisters out there! I look forward to meeting other survivors ,and learning as much as I can from others who have been living with this silent disease, Im so sick of hearing from others "you look fine to me!" lol if they could only live a day in my head... being trapped in your own damaged head day in and day out really is hard!

Since my last post things have kinda gone to crap. Was told to go to Emergency room at neuro clinic so I can be referred for treatment. Let this be a lesson to somewhere out there. Learn from this what u will cause i cant advise u on how to proceed........ I printed off email from BIA with instructions of where to go and what to do. I go to ER, fifth floor like told. Could not find correct dept. Someone was nice enough to show me. Get there and they say first floor. They walk me down there. By this time My brain is close to going into safe mode as I call it. I get to that window and they try sending me back from where I just came from. at this point was very upset and couldn't find the words to tell them what i needed. I broke down. Was told to write down my concussion history and my symptoms prior to show doctor. I did. I couldn't speak clearly at this point show just gave the nurse the sheet like I was told. She got to the suicidal part and it was game over for me. In came security guard and was taken to a private room under guard. They took my cell phone before I could get a text off cause no one knew I was there. It was the longest 4 hours of my life. Nurse came in to take blood. Asked her to tell me honestly if I was leaving today. She said she did not know and neurologist and psychiatrist would be coming in to evaluate me. They hooked me up to machines. Put me in a tube then back into room with guard. I looked around for something to hit the guard with so I could run but everything was screwed to the walls. And i didn't know where my truck was so I just tried to stay still while I was flipping out inside. Finally psychiatrist came in and convinced her I was going to kill myself today. They let me go on a PTA at their psychiatry office so I agreed. Gave me a script for 2 weeks of sleeping pills cause hadn't slept in a long time. well here it is 2:37am. This is what happens when I miss one. Too long of a story short; tried to make appointment like they said no appointment without insurance. That means no more sleeping pills, no referral for therapy and a bill with 7 types of tests that I know I cant afford. So if anything I'm worse off. Take from this what u will. 

Denny

To Denny,

I say prayers for you Denny. Please don't give up. I am not a TBI survivor, but my tall,good looking, fun loving 23 year old son was a victim of an assault in July of 2016 and suffered a severe TBI. I think I have an small inkling of your suffering. I see it in my sons eyes,hear it in his voice,in his walk, in his actions,when he's sleeping-which is unpredictable..He tries to be brave,I know he still has headaches..I get them too...sympathy pain.. the surgery scars, the waiting for justice for the assailant, the trying to work, the trying to be 23 again,the loss of friends...that don't get it, tired of going to therapists and doctors, tired of being tired.

You had a big impact on me when I read your post several times over the last few days. Think about going back to your chair again and you just might make a difference to one more person. Hence..here is the Starfish Story...

One night, on a sandy beach, a terrible storm started. It rained. The wind blew so hard that it shook the houses along the beach. The next morning was foggy and gloomy. Many starfish had washed up on the beach. A man named Buck walked out on the beach to look around. Peering into the mist he saw a young man walking along the beach. He was tall and slender. Buck saw him throwing starfish back into the ocean. Buck walked up to him and said, "Why are you throwing those starfish back into the ocean? They'll just wash back up on the beach again. It doesn't matter." Without a word the young man bent over, picked up a starfish, and threw it with all his might. It went way out in the ocean. The young man turned to Buck and said, "It mattered to that one."

 Author: unknown

Ms. C.

I had my first TBI survival meeting last night since finding out I have CTE. Traveled a long way because I can't seek help in my state.  I took up most of the meeting since I was new. It was good to be with people who understand. As everyone spoke I asked how they got there because I did not know. I was impressed by a girl who had a stroke. Nice girl. Her husband was there and very supportive. She is lucky in that. She works real hard. As they went around, I asked. One hit a telephone pole. Another hit his head on a pole. Done that more than once. I wondered how I made it this far. Was impressed with them all. It was good. Look forward to going again. Unfortunately, only once a month so found another; also out of state also. On the way home, I tried to figure out where I fit there. The only thing I got is they will get better and I will not. So someday, my chair will be empty. Hopefully theirs too but for better reasons.

I woke up in morning feeling like I just came off a bender; just like every other morning. I strangely remember those bender days or at least that feeling. I no longer drink because of control issues. I do things without thinking. They always seem to turn out bad. While laying in bed, trying to get up, I just thought, “I don’t want to go through this anymore.” Then I got it; the reason a lot of us commit suicide is not depression at all like I thought. It’s not wanting another day being like this. At least as I see it. I don’t know if that makes sense to anyone. I don’t know if that helps anyone understand.

Mornings I guess are the most emotional for me. But I finally get up, g to my computer and read the note I left the night before telling me what today is and what I have to do.  I started by putting what I did the day before but stopped. It’s like 50 first dates accept no date.

I forgot where I was going with this so I guess I should stop now. Sad. Only thing I have to talk to is a laptop that doesn’t talk back. Good listener though. Wish you all the best and don’t give up hope.

Denny

Sam, I get lost too on roads I have traveled all my life. I've learned not to turn my navigation off until I get there or I'll wind up in a different town. I know it's tough at a young age but it will only get better for you. You have a long life ahead of you. Keep at it and challenge yourself but not to excess. Your brain can only take so much. And yeah, people can suck sometimes. They have no clue. As time goes on you will weed those out who fit the suck category and keep the ones who understand. It's important that people you associate read this "Lost and Found" article and comments. Maybe that will help. You sound like a fine young man. Confident you will find your place.

Thank you for your encouragement. Have probably had 20-30 concussions. Hard to tell. 3-4 in the last year. I am new at this. I just thought I was getting Alzheimer's before my years until I saw a documentary about CTE and knew that was me. Just starting to get help. Went to the Brain injury Assoc. this week and they are going to help. Appears this has been going on for awhile. I'm somewhere in stage 3.  I have no support system. My wife doesn't understand even though the doctor tried to explain it to her. Told by a friend I am getting divorced. Guess just waiting on my papers. We still live in the same house and that gets very emotionally difficult to deal with because I don't want one and can really use her help right now. I found support groups I'm am going to attend twice a month. I feel so alone. Talking here helps. I want to be with people like me. People can read the symptoms but still have no clue what it is like to live like this. They don't understand. Thank you again.Denny

I was reading Denny's comment today and just want to say, keep seeking help and talking it through. It has been since 1996 and 4 concussions later, that I have been in recovery. I deal with issues everyday, you are not alone. I hope you have a support system to help you cope. For me, life gets better when I learn, let people know what I am dealing with and that it's "a one day at a time" process. Reach out to a local organization in your area and see if they can direct you in the right direction. As for me, one day at a time, and never lose hope.


 

I suffered a stroke five years ago at the age of 21. Processing information was the hardest thing I could do. My doctors would come in and speak with me and when they left I would have to turn to my mom and have her explain to me, as if I was a child, what they were talking about. My brain just stopped understanding anything. I could only understand simple things. I worked very hard and was able to luckily get most of it back. But even five years later, I still have issues. And fear I will live with these forever. I forget things constantly, living with lists is what I do best now. Sometimes I even lose myself driving. It's scary knowing at any second I can just wander off in my head and be somewhere else. I've learned to drive different ways to places, to switch it up so I have to use my brain to remember. I try so hard to control it, but it's exhausting. But some days are better than others. I still sleep a lot and sometimes make others mad cause I don't understand or I can't remember. But I've learned to live with it. I just hope one day it will get better. I pray for everyone going through this, we will make it through! ♥sam

God Bless, first, you should feel fortunate that you can read with understanding. I can not; I get panic attacks if I try. Way too frustrating so can't help you with the book. All I know is that you have to know the personality of the person you're interacting with. If they're impatient, or intolerant to begin with; that's on them. You have to expect that. I know it sucks. My wife has those traits and now that I appear to be getting worse, it's worse. I've learned to accept this; though it's not easy. I still see myself as before. Confident, witty, smart and 99.2% always right. Now I'm probably down to 30%. I live in CT. I looked into the Brain Injury Assoc and found one in RI. I have a meeting with the head of BIA tomorrow. Along with accepting your limitations, also accept theirs and don't expect too much from them. It will make things easier. I had to learn that the hard way. Don't take it personally. See if you can find a support group. I start my first one this month. I'm new at this and on this site. I didn't have that one life-changing injury. Multiple injuries finally caught up to me. You need to associate with positive people. I pretty well keep to myself except for a couple of people that love me no matter what. You are not alone. There are a lot of us out there but we are in the shadows. Trust in God. I do not know why somethings happen, but He will turn it around for you and someday you'll understand it, and maybe even grateful. And most important; be patient with yourself.  We can be our worst enemy.  Denny

I have had multiple concussions over the span of many years. 3 in the past year. Fear I have CTE. Been 6 months since my last concussion and I feel that I'm getting worse instead of better. My wife doesn't understand what I'm going through and why I do the things I do sometimes or don't do sometimes. We haven't talked since Christmas. I lost track of time and got home late from visiting family and friends. I was tTold she is divorcing me and I don't know why. I try really hard but guess I fall short of her expectations. I think I am what they call a flat liner. I shut off easily. I think she takes it as I don't care and I'm no longer there emotionally. It's hard dealing with everyday things now. Even deciding what chair to sit in at the table is an issue. Is anyone going down this road as well? Denny

Hello,  I want to thank the person who began this site...I have looked for years for something like a way to communicate with others who suffer TBI...I for one, had a Benign tumor removed in 2002....that was [I know] a long time ago..but the grief of lack of adequate communication with my spouse and now teenage daughter is overwhelming.   The pressure just keeps on building.   I wonder what books any of you have read to help?  I did go to a therapist who saw me right after the surgery, but she did not help at all.   I feel like no one understands me and puts me in a box to only satisfy them.   Wow...I said it.   I would just like to be accepted for who I am and lots of patience with my family for what I cannot measure up to.   Your listening is greatly appreciated!  God bless

Everything thing is different now. I have fear and get upset when people are talking in a group and I can't join in. They think I'm being rude but I cannot seem to put conversations separate, get confused easily and can't respond because everything is mixed up. I feel like screaming!

Barbara I know what you going through. I lost my memory back 1985 or 86 due to a yellow cab hitting the car I was a traveling in. I am still dealing with everyday things like loud tv or music or just conversation crows or even trains underground I don't get in them so it's really hard for me to go anywhere. I even lost contact with my lawyer and forgot the lawyers name. I never recover my money from my case in court. I don't know how to go about it since I can't remember my lawyers name. It's still is hard to cope with things.

My mom, age 76, fell the day after Christmas and suffered a TBI. We are in the early stages of rehab and working with her. I know it's early, but I'm worried that she won't ever be like she used to be. 😥

I had a heart transplant and my friend suffering from TBI sent me this article. It is so me right now! Thank you for explaining. I am sharing this with my family. Xoxo, AM

I suffered TBI & am *lerpching (reaching & leaping) to find WHO/WHAT I am. Additionally, EVERY human suffering from any brain injury walks a different path! I am "alone" NOT lonely! Nobody "gets me"....

People don't seem interested in knowing about my TBI. Everyone acts like they know exactly what I'm going through when in reality no one does. It has been almost 8 years since the wreck. I have learned to accept that and not be violent as much.

my boyfriend just recently got in a car accident and got a head injury. He accuses me of doing things all the time. I was also in the same accident but I got a broken scapula, ribs, and a punctured lung. He says it's disrespectful for me to complain. Is this normal for him to make me feel guilty? He thinks I don't love him and no matter what I say it's always wrong. Is this the head injury? What do I do?

It is many years since my brain injury, but I still have big problems trying to concentrate on more than one thing at a time. It has been some time, and trying to be the person that I once was, is a complete impossibility. I am sad to say.

Thank you thank you thank you! Putting this list together for me to see how I'm not imagining all of the various ways I've been affected after a TBI is so very helpful. Now I can share it with my boyfriend so that he can understand me on a whole new level. I was unable to communicate just how frustrated I was on a regular basis.

I had a severe TBI over 32-1/2 years ago and this is by far the best thing I have read. Interestingly I was at my DR's Retirement party this Summer. I am so lucky to have known him. Everyone knows of him: Dr. K.T. Ragnarsson. In reading this article I immediately thought of his comments. Here it is said:. Rehabilitation takes years after formal care is ended. He said, "I am sorry we do not have a cure ...yet." I have made important strides just this year. I will NEVER quit. Perhaps a cure is possible some day. Who am I to dispute the preeminent authority ? But I think the article, while excellent on many levels, should be corrected: Rehabilitation takes decades after formal care has ended. I do not mean to criticize, we are all on the same team. Jeffrey S.,  Patent Examiner and TBI SURVIVOR

I have been looking for this for the last fourteen years. I had a stroke at the age of eight and even I don't know what's going on with my own brain sometimes! Thank you so much for this wonderful site!

I'm not alone and neither are you. Keep fighting. This article gave me hope and a voice after loosing so much of myself in the accident. I see life differently, my emotions are very intense, I understand who I am "NOW" better everyday. Don't feel sad or embarrassed if family or friends let you down, you are going to get through this thing. I didn't know what a TBI was until it happened to me so I try to inform people who don't know why someone is better on the outside but still not healed but it's because the trauma is invisible. It can be hard if you have normal CT scans or MRI because you may feel like you don't have an excuse to feel different but you DO! I'm changed and that's ok with me now I know one thing for sure every single TBI is different like snowflakes no Traumatic Brain Injury is the same so keep fighting, use alarms for important times, make a list for each day, wright EVERYTHING down it helps your brain find new pathways and helps keep you on track so you don't have to ask or repeat yourself. I'm stronger then I've ever been in terms of sheer willpower. My husband is the greatest man on Earth he saved my life and he's the thing I love most out of this world along with our beautiful angels. I was lucky to have that one person to keep the faith for me when things get hard. My other family completely destroyed me after my accident. They didn't take the time to find out what is wrong or how they can help with communication and were mean and nasty. People didn't have the patients when I loose the word or forget what I'm doing. I get stuck in cycles that I'm not aware I'm taking so long because my seance of time is way off. For example hours and hours might go by with me thinking it's been minutes and sometimes things seem to be at a standstill it is very confusing but I'm finding new ways to be the new me and so can you. My husband told me I was doing find and he knows I'll be ok because I'm to darn stubborn to let go or stop fighting for what I want and that's a happy life.

My mom suffered Anoxic Brain Injury and went into a coma for 3 days. She knows my name, but doesn't ask questions. I miss my mom ❤️

Hello, very helpful information not only for me but for my family & friends in my life. This way the things that are harder for me to explain can be defined or explained better for the person if they want to understand me. thank you.

Dear Nov. 3rd and anyone looking for a place to start for resources and support groups, most states have brain injury associations, call them.

Barbara

I have a TBI and it's hard to explain to someone that doesn't know how it effects u..it's real easy for me to lose temper I'm not as fun and happy as used to be its been 2 years and what I remember cause I have a lot of memory loss is that I was a go go go individual and I been trying to get back in the work field but I'm 43 now and since I was 15 I've done heavy construction and operated heavy machinery and it's all I know and remember but now it's to hard on my body and I don't trust myself around others on machinery..what are my choices? I guess is what I'm asking... because I need to work.

She shouldn't try to work until she is ready and when working won't make her injury worse, hopefully loved ones can step up and support until that time comes. You can't push a river. Never push too hard with brain injury

My daughter has TBI but is trying to find a job. Where does she go?

I am a TBI survivor, twice. I am 56 years old, the first was when I was 17 years old, the last was when I was 34 years old. I have struggled, for years, to explain to my family and friends how I feel, how I think, how I compensate for what they take for granted. I have never been able to put into words what you just did. It has caused a lot of hard feelings and misunderstandings. I am so very grateful to you for this information. It will make things so much easier for me now. I hope I can search further with you for anything else you have available. Thank you with all my heart. Please feel free to contact me if you have any questions.

I have the same problem. Thank you for letting me know I'm not alone. I sleep in hope I will feel better when I wake up but that doesn't last long before I become brain unaware again. I've always had it.

Five years ago I had a stroke, found out that I had a hole in my heart and I had actually had 8 tias (small strokes) and 1 real one, over my life time. They fixed the hole in my heart noted that I had lost the vision in the left of both of my eyes and had left sided weakness gave me some pamphlets and that was it. I had no rehab, nothing. I was a bright vibrant busy 34 single mum, studying a Bachelor of Design. My life as I knew it stopped I could no longer drive, I couldn't walk down the street on my own without looking at the ground, I had left sided weakness and when I got tired my left arm and leg were useless, all that is explained in this article was happening to me and I had no explanation for it. I fell through the cracks in my country's health service. I contacted the Blind Foundation and the Stroke Foundation and eventually after a year I had an OT and a Physio. Because I had struggled on and was stoic and stubborn I didn't need them for very long to help physically wise. I still suffer in all these ways described and I know that pretending nothing is wrong just takes years off my life thank you for this article it will help me to go easier on myself and it will help explain what its like for me to my family who basically think there is nothing wrong with me because they can't see it and they never saw me in hospital suffering!!!

This is all what I have and not many understand. It IS awful. I cannot even put words to it as you did. Thank you for being one who knows. Sorry you also have head injury. Its awful to deal with. Thank you for helping me not to be alone.

Hello all. Only reading the more recent post (had to stop due to flooding: symptom when your brain gets over loaded with emotion) it brings me back to the early days of my TBI. One rainy night changed me and my life forever. Cracking my head on the pavement after being mowed down by a car on my bike, and with everything that happened after I am a lucky man. It's been 13 years since that day and as much as I would like to say I've moved on with my life, it still haunts me and lingers inside the very depths of my being. Just today did I run into an old teacher of mine that I ran into prior to my accident. Seeing her reminded me how much I dreamed of my future and what I wanted for myself but what happened was completely different. Luckily I had my mother who did her best to get me into a TBI program and after being asked to leave that one, she helped me into another one. Awareness, probably the best thing that someone can ever achieve but when someone who doesn't realize that they lost so much becomes aware of what they have lost, it can consume them an as Andrew mentioned, suicide is a thought that may come up more than one an hour. There is much I can say but every brain injury is different. I was born with dyslexia. It was hard to grow up with the problems that came with that LD and then to have a TBI, just made the world a more unforgiving place to be apart of but I never gave up on life. Learned to live with the suffering of severe mindgrains (don't know how that's spelled), the change in weather, loud noise (I live in midtown Manhattan), vibrations, stress, and a few other things can aggravate my head and I'll be in pain for days. 10 years after the fact on the same day as that life changing day an hour apart I was in a head on collision. Remarkably I did not suffer another TBI (that I know of, because hitting your head after having a TBI can activate your problems all over again). My body was damaged severely and I now live with chronic pain not only in my mind and head but my body. I survived though, I am here to share with you all a piece of my life. I did not die and neither did YOU. You are here right now. Technology allows us to reach out and be heard and recognized. Stay in the moment, try new things within your comfort and once in a while try to do something new or different. Learn to enjoy the little things and love, love as much as you can. I know from experience some people loose empathy and others gain too much empathy. Life can be overwhelming without a TBI, with it it can be as if your mind body and soul have been torn apart, thrown into a bag, shaken and tossed randomly back together but your still alive, please take the time to put the pieces back together. Respect yourself even if people don't know how to respect you and remember there is plenty of us out there here and somewhere else just like us suffering. What we lost can be hard but there is more to gain always. Hopefully you learn to appreciate the suffering to find the hope that one day that all the suffering will turn into pure happiness. This is one way to look at life, I know you can find your positive outlook as I have. Apologies for the long story. It was therapeutic for me, thank you all. Love Clark

Exactly what I needed to read right now. Feeling misunderstood.

My spouse is 8 years post stroke. Married 35 years with 2 grown children Oh my goodness. How overwhelming just to read all the comments that I totally can relate too. A women with young children and a baby on the way. How very difficult.  After visiting with grandchildren Bob is so wore out and can take a day to recuperate. Taking  time out for him to have a place to sit back in a dark room helps him. He starts his day the same way. he will sit in his easy chair in his bedroom sipping coffee for at least a couple of hrs in complete darkness and no sound. No seizures anymore but extreme anxiety. Bless you all.

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.

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