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. Reviewed July 25, 2018.

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 (664)

Hello,

Everyone is in my Prayers, I really hope that my Family will read this article, and my Prayer for everyone is that they have Understanding and Loving-Kindness around them. I am so glad that I was given a link to this website last year, I was going through tough times and still going through some tough things. This website helped me through some really tough Life Stuff. Things are getting better, I just got to have Faith and take one day at a time (sometimes one Moment at a time).

Know that you are not alone and Everyone is in my Prayers.

Thank You for this resource this gives TBI survivors Hope and helps remind us that we are not alone.

Sincerely,
Angela

I had a massive TBI 2 years ago am I still struggle with the symptoms of it: fatigue, memory loss, personality. Its a struggle, and I don't know anyone near me with a TBI, so it's hard to explain to people why I struggle to recall information and have a hard time concentrating. I hope to find a group with people who are struggling to recover after a TBI, so we can support each other.

I am a highly qualified Scientist/Engineer, I received a very serious Brain Injury in work on the 4/4/2003 in an Armed Robbery, Whilst in the employ of National Car Parks Ltd; in Brighton. I had to start from scratch, no drive to the heart for ten minutes, etc, etc; I have just begun to learn again. I started with learning to play the piano (self taught, no medical help whatsoever, just left to die.) and French. OU studies. Very little appeared to stick, but since the end of July things are looking up and I have re-joined the modern world, what a mess this country is in! However studies are going very well now. Small bites only! Twenty minutes french in the morning 5:00 am to 5:20 am Bath, shopping, piano, swimming one hour every day, then possibly depends on fatigue, the reading of the music will soon let you know, in other words nature will tell you what you can and cannot do, no-one else, so listen! Finish the day with a nice gentle stroll. Finally tune into Radio three or Classic Fm, Also not to forget two trips to Hove and Patcham for two hours singing popular songs from my era? and followed by some Classical Singing in the excellent company of Mr. Simon Gray and Mr Jason Pimblett, Highly recommended for those that have experienced a serious brain injury, Signing out, Christian Morgan. 5th September 2018.

My dad has a traumatic brain injury and I never quite understand why he's always mad. This clears it up a bit. Thank you so much.

What a fantastic article my husband has a hypoxic brain injury and I can totally relate to how he must feel reading this article, thanks for sharing this

I found this article and I love it, I have been dealing with my issues for over 3 years now and have found some of the tips that were in this article the hard way after many fights with friends and family. I wish I had found this site sooner as it would have been a tremendous help to me and my recovery process. My biggest struggle is the fact that despite what I show, I have almost no control over what happens. I used to be proactive and ready for everything that happened, I could make plans that rarely had issues. Now it’s like I’m constantly reacting to everything because I’m a step behind and this forces me to react quick and decisively whether I know what I am doing or not.

Our Daughter has been diagnosed With autoimmune encephalitis, You will have to excuse me I've signed up for so many of these types of sites. But this is one of the best reads I have ever read thank you so much looking forward to interacting Thank you so much

Patience, understanding & compassion are enormous gifts that I get from those individuals who choose to stay onthis sometimes still turbulent journey that I am on - 13 years ago today since the inhuman assault and TBI occurred. To not be treated as child, stupid or incapable are also gifts. However, when things arise that are more challenging for me to comprehend, DO NOT come at me with ”you are using what happened to you as a crutch”! Such hurtful words are damaging, on several levels!! Understand completely, you absolutely CANNOT unless you’ve experienced it first-hand. Find some tenderness from one human being to another. In the big picture, that is what I truly need.

Since my injury my wife and i fight every day,if i did not love her i would have left.

Everyone is in my Prayers, I have to try to make it to group again, and keep researching ways to help for Traumatic Brain Injury Awareness. Getting momentum again after life circumstances is difficult. Got to keep moving even if it is just small things in the beginning.

Just know that you are not alone. So good that there are good informative websites like this one and give as many links out as you can. My Prayer for Everyone to have Understanding and Caring around them.

I am figuring out what I can do for March, TBI Awareness Month, even if its small at first and build on those building blocks. My Prayer for a Bridge of Understanding to Bridge the Gap.

Thank You for helping so many people with this website, This gives us Hope,
Sincerely,

Angela

Have been tested. Told very high probability CTE stage 3. There are only 4. Don’t plan to b around for that. Seen my father in law die from alzimers. It was terrible. I know people try to b encouraging by saying u look good, or ur eating today or what ever. It’s almost belittling my problem. They think that it’s just going to get better or I’ll snap out of it. Not gunna happen. They think I don’t care. And to some point they r right. I do but not like I used to. Caring requires thought and that’s work for me. I avoid people and conversations at all cost. All this stuff requires my brain to process information and it’s tiring. My marriage has suffered greatly. Think she takes it personally. I still love her and want to stay married but don’t think that’s going to happen. I’m just not there for her I know but I’m not who I was. I can’t help it. I spend most of my time alone. I like it like that. I live on boarder of state forest and the animals have become my friends. I feed them every day. They wait for me to get up and come home from work. I love my raccoons. They come up and take food from my hands and just sit next to me and eat. One just held my hand last nite. It made me happy when not much else does. No one understands. And if they say they do; they don’t. The only good thing about this is that I told a few of my family members and we have gotten closer and spend much more time together. I’m 58 and still can’t tell my parents. I hide it the best I can. I’m still in a sport. I average 2 concussions a year and they just right it off to that. Know it’s nor a smart thing to continue to compete but my doctors says dmg already done. As long as I can compete on a high level to do so. It keeps me going. Something I look forward to. I get evaluated every off season. C what this off season brings. I’m just running on now I guess. Idk what my point was. I guess maybe to try to reconnect with family. Put differences aside cause it doesn’t matter any more. Just doing the best I can with what brain power I have left even though it’s all down hill from here. It’s ok. Have accepted it. It’s just really hard.

Hi Denny,
Who diagnosed you with stage 3 CTE? I haven't been able to get a diagnosis?

My husband had a very bad stroke 4 years ago, unable to use his left leg and arm couldn't walk and it also affected his brain and one eye is blind. He is not able to walk and do things but right now he struggles with understand, trips because he doesn't lift his leg high enough and falls down a lot. I have taken care of everything for years and I am finding myself getting so frustrated with him all the time. I've confessed that to him and I know he cannot help it. I would like some advice as my emotions are getting the best of me. I no longer work and trying to stay on top of everything but I can see so much of it falls my the wayside it gets harder and harder to keep a positive attitude and keep going.

So true I suffer from both TBI and PTSD as a result of post concussion disorder, several tragedy's I struggle every day since put on social security disability, I love to work I loved to be a carpenter or did I now sit in my make shift shop trying to build bird houses.

I also enjoyed working, loved my job! Surgical Scrub Nurse. Would give almost anything to be back. It’s all in my head, I remember the steps to many surgical procedures and skills needed. I miss it. I miss it.

I also hate it when people treat me like I’m stupid! My mind is still there. I just have a difficult time bringing it out.

My 57 yr old father suffered a giant Subarachnoid Hemorrhage on Feb 11th and survived. The damage is severe and has caused cognitive and physical disabilities. He Remains in the hospital. I am his only child, he has no spouse and the limited neuro-rehabilitation facilities have denied him access to their care. I feel that the progress he has made so far is incredible, compared to the grim prognosis I was first given. I will not give up advocating his rights and will continue to provide him with love, patience and respect throughout this journey.
ABI needs more awarness and hospital staff needs to be educated on the different care needs of this population.

Still needing help for my son 43,before wreak and what they called small brain bleed, has changed him,it's scary to watch my son go from loving husband and father to sometimes a stranger, his thoughts are not right, he was a hard worker now can't hold a job because he thinks people there are not who they are,says Mom I see what there doing, their trying to put spells on me,talking witchcraft and spaceships. Please give us some kind of help, neuro doctor saying he is physio, now that's not my son.No one is helping us

My son got what the doctor said was a small brain bleed, but he isn't the same, wife can't understand she says it's all in his head,but he can't work has strange thoughts, really strange, it's scary, he isn't my son,thinking he see the same people everywhere, doesn't like to go to stores,even has his 15 yr old scared of him.What could be going on, Can't get him help

What a great and complete article to refer to regularly. Social success is probably the hardest issue in a recovery

Hi, my son wrecked a motorcycle in 2015. He wasn't expected to live 3 days. His brain was bleeding everywhere and nothing the Drs. could do to stop it. A lot of prayers and we have been home 2 yrs. He has a gap where he remembers some things and not others. He doesn't remember 12 grade or graduation and is stuck at age 17 most the time but remembers working. He has a lot of anger and anxiety. The Drs. here are not much help. Any ideas on how I help him I feel lost an alone in this and I know he's hurting.

I am here if you need to vent. I hear you. My husband was in a T100 Toyota Truck and hit a tree. No explanation. Amazing how some of my family think he is "faking it". Hurtful.

Cannabis oil, FECO

I know how it is to loose ur memory. 58 now and can’t remember anything before 20 or so. They say CTE stage 3. Frustration brings in anger. Remembering what u used to b able to do is hard to deal with. I find when I am told u r looking better today, or it’s good ur eating. Or what ever frustrates me and I don’t like it. Know they r trying to be encouraging but they are not in my body and no idea how I’m feeling. It’s almost like they say” u look ok to me” hate it. I find lithium carbonate helps me with anger and suicidal thoughts. Done doctors don’t like to prescribe it cause not good for the kidneys but it works. I go to a support group. It is good to b with people who know what I’m going thru. I’d he doesn’t go to one I strongly advise he does. He may resist the idea. It’s like summer camp; u don’t want to go but when ur there ur happy u went. Be patient. Know what pushes his buttons. Make sure he gets rest if u can. He needs quiet time. Don’t let him sleep with tv or radio on. Brain still process info even when ur sleeping. It needs his rest. We like to talk sometimes but listening to long drawn out conversations wear us down. Keep it to the point or u will loose him 1 minute into the conversation. Pray for him as I’m sure u do: u are fortunate he is alive. Give him space. Best wishes

My daughter helps me by filling in the missing info in a very conversational way, whether it’s just the two of us or a larger group. She will say, when with me, remember.... (doesn’t wait for me to answer) and tells all the details to help me remember. When I don’t she tells me what I did or said when it happened. All very naturally without pressure. She basically tells me a story but does it in such a way as to bring me into the conversation. When we are in a group and she realizes I may not remember she does the same thing bringing everyone along so they all add detail. No one is aware that I don’t have a clue but once something seems familiar I join in. The worst thing to do is put pressure on, expecting him to know or be anything specific. The pressure is so horrible that I’m tearing up just thinking about how it feels. I know I am a disappointment to som of my family and I wish they didn’t feel the need to let me know by pressuring me and acting as if I am an idiot because I don’t remember something. One thing we do get easily is how frustrated others are with us and our frustration is nearly overwhelming so adding yours is just too much. The same with expectations. Have some for us but keep them at a level we can handle then feel good about doing well. We need the positive feelings of accomplishments much more because of the constant failures. Hope that helps.

My son was in a car accident when he was 17 also he was in the back seat and I didn't have a seatbelt on so he was thrown 35 feet from the vehicle . Actually he lost two and a half years of his life that he does not recall! My son will not accept that he has a disability which makes it hard for him to find a job ,I also understand you saying you feel lost I do two at times too. Never never never give up hope. I tell my 21 year old son as often as possible if God didn't think he could go through this he wouldn't be with us. Lord has a plan for everyone.

Hello Kathy, I just read your comment. The only thing I can think to say is to Google search to see if there's a group meeting for caregivers of of people with similar injuries in your area. There are groups on Facebook as well. I hope that can help you.

I had my tbi in March of 2013. I’m 46. The last 5 years are a blur. All I did was cry and carry on for the first few years. I refused to take any prescription meds. I didn’t want to take anti depressants and put a band aid on it. I want to fix my problem. It’s very up and down and half the time you’re asking yourself if your going crazy. I have short term n long term memory loss. Talking with long time friends and family is like therapy for me. It helps me remember things. Writing things down help me a lot. Avoid alcohol. I always was a wine lover but it completely exacerbates my brain fog. I feel like my brain doesn’t work, however, I have a high functioning job and I’m a single mom of three girls. My boyfriend is my only daily support. He’s very understanding so that helps. From the outside, everything looks perfect, but my head is a complete mess. My neurologist prescribed me adderall. I don’t think that does much for me. The first time I took it, I fell asleep!!!! It helps me be more social maybe because most days I want to lock myself in my room all day but I can’t. I can push myself now...five years later. I definetly suffer(ed) from some type of chronic fatigue as well. I would have to take breaks as I got dressed in the morning. I would drop my children off at school and go home and take a nap and go in work late every day, Thank God I had a job that allowed me to do that. At one point, I thought I had MS. I couldn’t walk up a flight of steps without feeling like I worked out my legs at the gym for ten days straight with heavy weights. I increased my magnesium, added amino acids, cbd oil and MCT oil to my diet and that helped tremendously. You end up laying around because that’s all you can do!!! I gained 20 lbs that I’m still trying to get rid of. I have also done some “Keto” diet things like adding more fat to my diet. Good fats. Good Fat is awesome for your brain. I am finally on a gym schedule that I stick too. That has definetly helped in the happy department. I have recently tried thc oil. Thc oil makes my brain work like I’m 25 again. I was always creative and funny. I feel so DULL now. There’s a side of the thc that I love and another side I’m not so sure of..maybe a little paranoid. I’m working to find natural solutions. Hope this helps

Thank you for taking the time to write this. I’m sorry for what you have been going through. I hope each year life gets better and better for you.

My son had a severe TBI at age 21. He’s 29 now.
The difference between you and my son is, he’s not self-aware that he’s brain is different, dqmaged, or that his abilities have changed.
It took me years to understand him better, and adjust to his “new” and often hard to cope with personality, since his TBI.
His frontal lobe was most affected in 3 areas. Also there was some parietal and temporal lobe damage as well.
I wish I had read your post 7 years ago, instead of slowly realizing over years that there are things about him, I cannot change or help him to do better.
The only thing that hasn’t changed is his appearence, voice, and his politeness. His personality is the hardest struggle to live with. He changed in personality the way the famous Phineas Gage did. Not in a good way at all. I walk a fine line with him, knowing he often acts like a child, but knows he’s a man and wants to be treated as one, even though he has many childish temper tantrums. He also breaks things and has gotten physically violent. as well. The physical violence has stopped for a few years now. Whew!
I wish there was a way to repair TBI’s the way other organs in our body can be repaired. Maybe someday.

My best wishes to you. Thank you again.

I read your letter and have had a TBI for just over 40 years in July of this year I am no neurologist but parts you have written about I take it that your son has had frontal lobe damage because that is where the Amygdala is which controls your memory, Behaviour, and it gives a person Emotional Control know that about the brain because I see a Consultant NeurPsychologist every 2 weeks at home only at home because over the years I have had 18 operations I do drive but at the moment it has been not travelling 12 miles away at the moment to the hospital I'm sorry if this is boring because I myself would sooner talk to someone over a phone or even see them, then you would be better to answer questions Stephen by the way I got run over by a drunk driver when I was 23 years. old and it's been hard learning everything all over again but I am alive.

My husband has an AVM and as a result of a blocked shunt he had a subarachnoid hemorrhage and stroke Dec 20/17. On March 6/18 he had a secondary hemorrhage. Both of these were huge. Reading the posts has helped me know a bit more on how to talk to him in a more positive way. He's not talking currently and it's hard.

omg my mom had an avm hemorrhage in march too and it's so so so hard but it is getting better slowly and this article made me realize why my approach has been wrong. it will get better !!

As I approach my (5) Year Post M.V.A. ....I still keep looking at & reading through this article..thanks again, you made MY path to the "New Me" a lot smoother....Godspeed to all on the path of their own revovery..

I haven't posted my progress in a while. I'd rather reply to others and try to help. I was diagnosed possible CTE 2016. I'm somewhere now in stage 3. I don't plan to see stage 4 through.

Is there anyone out there that can give me an idea how long I will still be able to work and function? I am self-employed and my job is pretty mindless but I know I don't have the capacity to learn a new job if I had to.

Told now that I may have Focal Neurologic Deficit. Found out today. I still don't know what that will do and how long that takes. I don't know a lot now. I have no insurance but just donated my brain to Boston University CTE Research Center and they are trying to steer me to a doctor who will take me. I advise you all donate the same. They don't get any walk-ins. Lost train of thought...

oh, is there anyone out there going through what I am or has cared for anyone who is where I am at and where I'm going? Let me know if you're out there. This just went from bad to worse.

I completely understand how you feel, ive worked with ppl with TBI in the past and believe it might even be possible i suffer from it also.

I’m trying to write this as fast as possible. I’m not officially diagnosed with FASD however, it has come to my attention after seeing a picture of myself at age 7, relating to so many symptoms and then I get here. TBI. I am 52 years old and spent my whole life with headaches, being called clumsy, insomnia, got put in a State mental institution where they diagnosed me with conduct disorder, etc. I have been diagnosed with everything-mentally possible. It was the year I turned 39 when the headaches became unbearable migraines. I was diagnosed with Arnold Chiari Malformation. I did my homework on this before I decided to add my first ever comment...It appears that I was born with some type of cerebellar abnormality, that in 1965 no one would’ve caught because it wasn’t bad enough to catch anyone’s attention and no one did mri’s back then. My mom accused me of faking the headaches, stomachaches, vertigo as a child and they all made fun of me being clumsy. I had decompression surgery but still suffer from the same symptoms but not to the degree as before. I was also born with severe gastroospheagal reflux disease and everyone noticed that-I projectile vomited every time my mother fed me. That was cured in ‘65 by adding cereal to the milk. Off track, sorry. I had/have a physical brain injury as a result of my mother’s poor choices, my life has had way more downs and I’m diagnosed Schizoaffective bipolar type-Borderline Personality Disorder-ADHD-PTSD-Anxiety and Panic disorder. I’ve been arrested. I’ve been a drunk. I’ve lost everything. But, I have a son that is saving my life. Because I didn’t drink while I was pregnant-but I was sure sick raising him. He loves me enough to forgive me and while I cannot work anymore, he takes care of me. I don’t hate my mother, I just wish she would own up and apologize. Sorry for the way to long story. Thanks for letting me tell it.

Wow, Tracy, that's a lot. I never put in one than more comment but have experience in this too. My first wife, about your age, was diagnosed basically with all you have described. We had kids together which I wound up raising without her. She too was put away. She had a bag of pills she would take but they just masked her problems. In regards to your son; I'm glad you got his forgiveness and now is a blessing but it doesn't seem you have done the same for your mother. Don't expect her to apologize. Sometimes you just don't get one. Put that burden away and forgive her. It will help you a lot. Know its hard and it sucks, but for you: do it. I never preach cause it either helps or gets people mad. I am only going to tell you what happened to my wife. She struggled through, drinking, drugs, everything she shouldn't have been doing and became homeless. I know she tried hard to be straight and be a good mother, she had her good moments but went back to her demons. She wound up on her mother's couch. She started going to a born again, bible preaching church and gave her life to Christ. He turned her life around. She was doing great. Its just her body took such a beating all her life; it gave up in her sleep. God saw fit to take her. Her struggles are over and she is happy. The point is: God turned her life around. Doctors can't do it. If you have exhausted everything and you want your life back; He is waiting.

Thank you for giving me a voice. I was 15 when my TBI occurred. I’m 52 now.
I have started having memory issues, night seizures, balance difficulty, and noise is so horrible. Being in a crowd is frightening. Thank you again.

It will be 30 years since our son's TBI. It is still difficult for family when he is in public and causes them embarrassment because he interrupts conversations constantly and corners people he knows with lengthy conversations. It has been next to impossible to help him remember how to deal in social situations. He does not have anger issues but he has no filter. Injured at age 15 in most areas of daily responsibility he is stuck. Any suggestions would be helpful Thanks.

I am here if you need to chat. My husband, Gary, talks sometimes to people in very scary ways that would get him shot. I am here.

It could be he's very unconfident about whether he can make people enjoy his company, perhaps help him focus on when he is nice to have around by telling him , which will will ease his worry

Hi I have a brain injury. Thank you for bringing this up. I perhaps can see me in him. I had great doctors and therapists going through many and finding them. Life was super hard. Some good friends knew my difference and loved and helped me more all the same, and helped, others, disappeared, my family, says, do not talk about your pain or anything, no one wants to hear it, i am songle, 57 now, accident happened at 48, i used to be able to handle all social situations, kind of shy, yet spoken when around comftorble people, family members, all extended family, the memories of past love and memories are wished to happen in the now, to be called and ask how i am doing is huge, for my.sisters to call and ask if i need any help, to talk about any issues i might be going through. Or anyone in my family, for them to actually ask me if they could have my paperwork and read it of my diagnosis, so they understand, to help guide me through so i do not feel alone, to acknowledge me and have their children, or even their childrens children, understand and come see me, they do not, i feel isolated, in this whole thing, and i find myself, doing just that, talking with strangers about my situation actually about these things, counselors, theralists, psychologists, i have spoken to do not feel family and support is important, i have asked for help to write a letter to them, i have heard, i do not communicate with my brother, and by my sisters husband, he is mean, i myself wish there was a program or group to help me with this. I spend a lot of my time looking up answers on my internet on my phone, watching tv, so i feel i am included in something, i am in pain, in my feet, my legs, back, hips, spine, arms, and head, 24/7 daily, and i do believe with more love and connection, i would do a lot better with help, love, compassion from all of my relations, cousins, etc... those past memories are huge...and best to keep new ones coming. No excuses from anyone of why not include him. The more of me being involved and invited or being seen at home with others and involved, the more the mind realizes of what needs to be changed and how to be better in time. Yet us that have the brain injuries can not get better, with being ignored. It is a process. It will get better. He knows from observing othersand will learn. It will just take time, love, and patience. In the real world. Be nice, be nice, be nice, and in with others. He may just happen to settle down. Wishing you all the blessings in the world

Yes, yes, and yes, being ignored by friends and family is turning me into a hateful monster myself.

I understand very well- I think I need to be more aware of this myself- I am ok when I am well rested, however if I am tired, or a Loud Noise, or if there is a lot going on (even when there is not much going on sometimes) - we try to over-compensate sometimes, especially if we haven't seen someone for a long time, we feel that we have to catch up with them, and we sometimes or a lot of times tend to repeat ourselves. My Prayer is for the Gap of Misunderstanding, Confusion and Heartache to be Bridged by Love and Understanding- my wreck was 15 yrs. ago-

We feel very misunderstood, we Pray and Hope for a glimmer of Compassion in the World- to increase awareness in the TBI survivor as well as Understanding in others will be the beginning of Bridging this Gap- we feel we are trying to be back in the swing of things- we often get overwhelmed in social gatherings, there are a few different "filters". We sometimes get anxiety like things going on at the same time and when area gets more busy - our senses don't work as well after injury, and these main 5 filters that help filter our senses, well they don't work as well after TBI, Traumatic Brain Injury is a very Life Altering Event in ones life.

My Hope and Prayer is that Compassion and Empathy as well as Understanding will help. Maybe take your son outside with a few people at a time, maybe a park rather than a busy restaurant- busy to some may not be for others. (He may need a break once in awhile- commotion and noise as well as sensitivity to light) We want to be the same as we were and this may lead up to frustration, also frustration for not being understood, and the feeling of being left out )

And as far as family members being embarrassed, my suggestion is for them to get a link to this website and other websites that help with Understanding- My Prayer is for Acceptance and Understanding. it starts with Educating oneself about Neuro Injury also will help in understanding that there is a difference between Neurological and Psychological.

This is good this is the start of helping Survivors of Brain Injury, a very hard to understand, often misunderstood, and very difficult issue. Thank You to All that are willing to Learn about this issue. March is Brain Injury Awareness Month. It is also my Prayer that people empower themselves and TBI survivors to keep getting stronger, Acceptance is so important for us, and then maybe not use so much energy on worrying about what others think, and move on to concentrate on Wellness, finding Coping Strategies, Finding a New Normal, and Accepting Limitations. Eventhough some injuries get better ( like for instance some of my issues have gotten better, some have got worse, however my acceptance of my limitations is getting better- example: my dizzy spells have got worse, however my Acceptance Level of myself has gotten better, lessening the Anxiety and Stress that often times sets off some Medical Issues- It is quite Complex just as the Human Brain is Quite Complex.

As I get out and about experiencing more Experiences that have Compassion and Understanding also my Spirit can feel less loneliness and more positive vibes, these Wonderful feelings and vibes allow more healing. Wonderful Healing is my Prayer for Everyone. it is also hard for loved ones ,because they may put up blinders, part of them , well they don't want their family member to be hurt by this, hurt by TBI- for years no one knew what was wrong , sometimes they didn't take the time to find out- My Prayer is for Love to Heal. Every Injury is different, however very much similar.

(Note to my Family: I Love You, I Hope that this site helps us, "Love will Heal Us", and a very familiar one: "Always in My Heart", We have started the beginning of the Bridge of Hope, thank you)

Everyone Thank you for taking the time to click on this link for the beginning of understanding to start.

Have a Great New New Year, 2018. Hope for Healing in Our Hearts.
Sincerely,

A Listening Heart Prayer Ministry

I just want to read what i mean, even reread it to appreciate that I'm really okay to heal. Thank You!!

I hope you take time to read

Sigh. I get so tired of disappointing people. I wish I could be who I was.

Me too. I’ve started trying to think of it as instead of trying to find my old self and since I have to start over anyway, to just rebuild the old me. My sister says “how great! You can be whoever you want to be now!” I’d rather be the old me. Then I knew what I knew, now I think I know but it just isn’t there.

My Prayer is that we find more understanding in 2018, Compassion and Empathy is what we need. There are Blessings for us and I have been trying to not be focused so much on worrying about what others think. it is frustrating when there is an information gap and that people don't understand. I am currently trying to patch up 15 yr. old information gap. We might miss the Blessings that may be around the corner if energy is used towards worrying about what others think ( I know how it feels and alot of us do) I believe we have Hope in 2018, I was told in Grief and Loss Group few years ago that it's a Re-discovery of ourselves, and it is my Hope and Prayer that Survivors of TBI send this link to their people and I think people will start understanding better of how this affects us.

My heart goes out to you, and no one should ever feel that way (I can relate and many of us can. we have an added hardship in someways, the injuries are not seen, and I think sometimes people think the TBI survivor can somehow "snap out of it". It is my Hope and Prayer ( and I believe that websites like this is the beginning of bridging that gap in hopes that people can come together and meet in the middle of the bridge. Acceptance would make it easier for TBI survivors to start Accepting the differences in their lives after such a Life Altering Event. It is my prayer that Family will ask more questions, and try not to ignore the issues surrounding TBI, and is also my prayer that Loved Ones would Learn about Neuro Issues and TBI. This helps the Healing Process tremendously (currently working on this with my own people).

Keep your chin up :) You are not alone, There is Hope,
Blessings and Peace to you,

sincerely,
Angela in Colorado

This says what I wish I could remember to say to people. I am amazed at how rude people can be, I usually just walk away because they will never understand because they do not see an injury.

Yes, I understand, I think they don't see our injuries and there is a information gap that takes time to Bridge. it is my Prayer that we can somehow Bridge that information gap with good information and also I think websites like this will Help Us and I think Doctors and Professionals are understanding TBI better,

This List of Symptoms and what we can do to help others with TBI and other Neuro issues is SO GOOD, SO AWESOME! This is helping my Family understand and helping me in Accepting Limitations, and brings some of my symptoms down. Coping Strategies are next on my list and Taking Care of myself better.

Have a Great 2018, I believe it will be so Good, and I'm going to think of things I can do for March, Brain Injury Awareness Month that is coming up here soon, this Spring. I want to pay it forward for all the Wonderful Help I have received,

Thank You also for everyone contributing to this Website. (I do believe that this is part of the beginning of a lot of Progress to help Loved Ones to understand as well as TBI Survivors to better understand what they are going through, this is such a Confusing Issue and I am so Blessed that I was referred by a friend to this as a Link).

With a Hopeful Heart,

Sincerely,
Angela in Colorado

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