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 (626)

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’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 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.

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

I’m heartened to read this list of “don’t says” because I sometimes do intervene when my husband has forgotten to put the coffee tray + filter in the pot and water is spilling on the counter. I need to remember that he is having what we call “a glitch in the matrix” and is trying so hard to remember what he’s doing. I can relate to his memory and frustration issues-I May have an old TBI myself from a bad car accident as an infant-but his injury is 11 years old and he had a vibrant life beforehand. I actually can’t believe how well he does most of the time. Here are a few requests I have of him and hopefully they are fair to ask:

Share when you’re having triggered moments. I forget that you struggle if you don’t tell me because you’re such a hero the majority of the time. When I’m aware, I can be much more empathetic and helpful.
Take the space you need to let your brain retrain or rest. I can handle things around here while you’re rehabbing. I trust you, I know you’re not a slacker.
Be honest with me about what you need. It’s not going to hurt my feelings if you don’t want breakfast or a back rub. If you receive these things but they make it worse for you, my mission is not accomplished. How I think I can help and what I can offer isn’t always what you want-I get that.
Don’t isolate if you don’t want to in order to protect me from your lack of emotional presence. I would love to be asked to be near but that you need quiet. I try not to take it personally, but I don’t always know what’s going on either.
When you are chasing your fear about whether it will always be this way or trying to figure out what caused the trigger, know that I’m not expecting answers or hoping you’ll hurry up and figure out a solution.

Know that I love you and I’m not going anywhere. xo

I really need advice. I am dating a veteran who has TBI as a result of being injured in combat. Sometimes it seems like he just wants to be alone but does not tell me. He also seems insensitive to my needs and would rather be sleeping. I don't know whether to take this personally or not. I am trying so hard to have patience with him. When I bring things to his attention he is so apologetic and just so loving.

I care for him deeply and I just need advice on how to hang on because sometimes I just feel like letting go since he seems a little detached. He tells me he loves me and wants me in his life but has a hard time really showing it. And frankly, I am not sure if it has anything to do with his TBI. He also says he suffers depression.

I just would like some advice because I do love him and I need to know what I can do to help him.

Thank you!!

Hi,
My husband was in a car accident in 2011.  His personality changed after it happened.  We didn't know he had a head injury until 5 years later. My husband struggled with sensitivity to light and sound and was extremely irritable. He struggled with severe anxiety and depression and he slept all of the time.  The happy go lucky guy he used to be was gone.  He couldn't remember things and was freaked out in social situations. We couldn't even go to the grocery store. He was constantly saying we were talking too loud when we weren't and no longer wanted to be around family or friends.  He was a social butterfly before the accident and after became a recluse.  I thought it was stress.  He's my best friend and we were very close but after he was distant and indifferent.  

Please....  don't give up.  It is hard when you don't understand a brain injury.  My husband apologized all of the time for his behavior and then would feel guilty.  He couldn't control his moods.  Read everything you can on brain injury.  I know it's hard at times but hang in there.  My love for my husband got me through.  I realized that the man he was pre-accident isn't coming back.   Certain aspects yes...but what he was before no.  I think when I let go of waiting for him to get back to "normal" or his old self I learned to move forward and learned to love who he is now. 

He needs a good counselor, neurologist and someone who can possibly help him with medication like a psychiatrist. He also needs you or someone to help keep him on track and be his support.  My husband was suicidal and 6 yrs later with lots of trial and error, counseling, cognitive therapy and love he's doing better and we've adjusted.  It takes time. I have so much to say and not enough room to type, ugh.  Stay positive and read read read so you understand the effects of TBI and can better understand him and what he's going through even if he doesn't. Patience when they have none. Understanding and kindness when they're irritable or angry.  And support when they feel low and frustrated.

TBI is hard on spouses both male and female. I am TBI barely surviving. Told high probability CTE stage3. Now also Focal Neurologic Deficit from multiple injuries due to Street racing in my younger days then stock car racing. There are TBI support groups for caregivers. Sure u all know that. It's hard for me cause no one understands. Oh, they say they do; but no. It's like we have a new personality. And not new or improved. Its hard for our loved ones to see the change and there is nothing u can do about it. Seek a support group. I attend one for me. Nice to be around others like me. I can be myself and say what I want without raised eyebrows or feeling stupid. I thought I was highly intelligent at one time. Now have problems with simple math. And thank God for GPS. Both survivors and caregivers should attend support groups. There is more of us out there than you think. Find them.

Deb,

I have been diagnosed with high probability CTE stage 3 from multiple concussions and head injuries due to auto racing.  The best advice is patience, understanding what he is going thru and his state of mind at the time and probably most important: don't take anything personally!!!!!!  I am older and have had a lot more hits than him so I'm going off how I feel to relate to him.

He needs his alone time. Some need more than others. That is the time we use to quiet all the noise of things going on around us and helps us recharge or sometimes just cope when we are overloaded. When he is done with that time; he will come to you. A brain is like a computer. TBI is like a virus. It corrupts files. Slows things down, and can crash and go into safe mode. That happens to me and will to him. We can only process so much information. Every day is different so if he has a good day; don't expect the next to be good as well. May not happen. And if he has a good day; don't think he is healed. It takes time.

The words men love to hear "we have to talk." Keep it short and to the point. NO fluff or he will shut down 1/2 way through. Not that he doesn't care; but info will stop being processed and he will have no idea what you're getting at or remember it.

Fatigue is a problem. It's not that we don't want to do or go where you do; it's that we are shot mentally and physically and just don't have it in us.

Make sure he gets enough sleep. He will require more because of the damage. Make sure he does not sleep with the tv or radio on. When sleeping your brain is still processing what the ears hear so it doesn't get a break.

If going out try to plan things that don't take all day. We start to drag early afternoon. At least I do. If going out or to dinner; go out earlier. Try not to get a late start.

I am NOT, I repeat NOT a drug guy. After having a breakdown in a brain trauma emergency room, they gave me Trazodone 100. I take one 2 hours before bed. It helps me get a good night's sleep and doesn't make me feel like trash in the morning. Also helps with depression. I struggle with that every day.

Don't forget; our thought process now is not right and we are apt to do things without thinking of consequences, so be aware of his state of mind.

Depression also looks like we do not care. That is so not true. We are just in survival mode. I flatline emotionally. He may too. Again; please do not take it personally. We are just emotionally shot. Sometimes the light is on but we ain't home. It is hard for us to watch how it affects you, just to let you know. We realize we are not living up to our end and giving you the attention you all need. It bothers us A LOT. We beat ourselves up over that.


I hope he is on the mend and this will all go away. The brain has a way to bypass stuff if not too badly damaged. I don't know if you go to support groups. They have them for us and ones for caregivers, which you qualify for. I don't know your faith. My wife relies on God a lot. It helps her.

I think the question here is what is your commitment to him; not his to you. Unless you talk to his friends and he has been that way all his life; then he is really doing the best he can. My son is a Marine. He has the same problems your boy has. He was the lead driver in the convoys; all the time. They knew he would get them through, but it was at a price. I believe most that serve have good morals and values. They get tested in war, but they do come back. Have faith. God bless you.

Thank you for sharing your perspective! I teach people that work with people with TBI - and a huge component is around working with family members, and helping them understand. I would love to use some of the analogies and examples you have used within my teaching, please let me know if you have any concerns with me doing this.
Kind regards, and best wishes
Emily

Thank you for sharing. I had no idea that others feel exactly as I do! My husband suffered a TBI in 2005, had been doing fairly well until a few months ago. His issues have worsened and we are both scared of what the future brings. But your list did bring up a lot of patterns that will help me when I discuss with him.

Read through a handful of comments that all made too much sense. Have been out of Shoc Trauma and Kernan Rehab. for years now after my accident. It all made so much sense it is almost scary. Have been well or am always recovering for years now. All I can say is bless you all, it is a long road recovering. One day reachable by us all. Keep on and we will all one day. ,Me

Yes, I am trying to stay on that very Neuro Pathway; Recovering, One day reachable by us all, Keep on and we will all one day :) Yes,

My brother in Law went into Cardiac Arrest when he was 37. We are about to hit the 6-month mark. I know seeing all your post and its been years. He suffered Anoxic Brain Injury. For my sister its super difficult to juggle 4 kids ages 10,5,4,2. He is at the angry stage. He is mad at the world cuz he doesn't remember long enough why he is the way he is now. He was a very active man. He ran our family car business. Coached baseball, basketball and football. Exercised every day and ate healthily. He was involved in our church which he was on the board of finance. He was also on the school board. He is angry that he is no longer able to do those things. How do we help him with being angry? It absolutely breaks my heart. Reading this you all probably think I'm awful. But its so hard to understand this injury. My dad passed away 12 years ago in a car accident and my brother in law was what held us all together. He took over the business and still handled my mom, my sister and I. Please help me help him! Any info would be greatly appreciated. I will keep you all in my prayers

I'm so sorry Megan. It's so hard being a family member and helpless. I'm 9 years in and I still get angry at times. Frustrated and sad more often. No acceptance yet. I too had an active lifestyle, job, scout leader, backpacker, rock climber, traveler. When mine was taken from me, it was also taken from my family. Remember that it also affects you and your sister and the kids. Very important. Let him be angry because it sucks. I can't think of anything to help him other than be emphatic but not patronizing. Don't do the "but you're doing so much better" unless it's truly warranted and not at an angry time. Go for walks, go to games that aren't related to him, expose him to totally new things that has nothing to do with his 'prior' life. But to really help him, accept that it also affects the family. It took my husband years to do so and admit, he was angry about the new me and the things I could no longer do. Hope this somewhat helps.

It is process with no end date

To Everyone, and hello, (I think I was on here a decade ago)

Mine has been 15 yrs ago, TBI, spine and nerve stuff, I have a good Psychology Dr. however it took me 13 yrs. to find one. important to find one with compassion and empathy, and finding a Neurologist that takes Medicaid has proven to be a seemingly impossible endeavor. I am currently still learning that I better concentrate on what I do have rather than what I do not. Holidays are rough, and missing how things were before. I have been reminded this Holiday season to be in the present, and currently working on coping strategies, accepting limitations, and finding a new normal. I am stumbling on this current part of my journey, however my dreams I am reaching for, to help others one day, and helps me see from a perspective from up above, and looking down at my situation, and asking "What can I do today?" "What can I do in my re-integration phase?" I want to help raise awareness of this difficult issue, as well as other issues throughout my next half of my life. There is a higher calling, I believe, and it takes a while, I was told it is like a spiral staircase, I will try in the future to not sabotage my own progress with adding more stress or unneeded worry. These new neuro-pathways are so good to look forward to, also because I have felt I have gone so many steps back again, and I am currently still having to realize how negative thought processes add to my seemingly endless feeling of spinning my wheels. I am glad I am not ignoring that feeling, and also not going and branching out for a while, I realize lately, I am glad I made those strides of I guess "getting out of my comfort zone" and trying new things and going to new places. once in a while (well lately seems I have missed a lot), I miss something when I don't have enough energy this is when it brings on my frustration, it brings on the fight or flight response, and this is not good for TBI or PTSD I have found out. I would miss group once in a while (as well as other goals I had planned, my intentions are to get better and feel better, however, my injuries have limitations attached that still often times keeps me from completing my goals. The stress caused my own frustration about myself not finishing what my intended goals would be, now realizing that it did have me in a tail spin, and is difficult to find out what is going on cognitively as well as emotionally. (I told my Dr. that it is so weird to be a mystery to my own self) Fight or Flight and the hormone cortisol that is released during stress is my cycle that I realized I have to fight against by trying to be in the present, making realistic goals, being aware of limitations. This is the next step of accepting the limitations, with this brings on more frustration at first, however it does get easier as time goes on. I have learned a lot about myself, in group years ago, the teachers told us that its an ongoing "re-discovery" of ourselves. It is so good to go to therapy, as well as group because it helps us learn we are not alone, and I have met so many amazing people. It is my prayer that the stigma associated with neuro and other limitations, often associated with fatigue and chronic pain, as well as the psychological effects of TBI, it is my prayer the stigma be dropped and we as a community can be looked at as "WE" rather than "them and us". We can use this as an opportunity to bridge the gap and find compassionate and empathetic people along the way. Learning lessons here while we are here on earth as well as helping others learn these important things. The Golden Rule is based on this, and it is my prayer that it be implemented and be a reminder to us the bigger picture and how amazing this journey is.

Blessings and Peace to you, Sincerely with a Hopeful Listening Heart,

Angela in Colorado

Hi Angela!

You are a rare amazing TBI survivor and its nice to hear and Its only been 12 yrs since my double skull fracture and 15hrs til i walked in ER with earache but its been community, family, and organizations here in GA/TN that has all treated me same evilness and weakness of TBI along with seizures i have had since surgery and normal detail of TBI patients. IM now student at APU but my family is even less support than 12yrs ago and literally have acted same too each time i almost make it and all them will come and tell me they help and care i give them cash or whatever then Im with myself again usually all hope that i had acheived ruined and beyond survival and regain stability at all. Then suddenly my enemies that are opnes disgusted with behavior and refuse to come help or give a ride maybe to get water; but also wont contact me at either. So in Colorado, Utah, Nevada, and closeby other states in that region dohave some support or at least maybe people that believe in living as: We and not( them and me) still so maybe hope to live life in peace without intruders constantly wondering in here to do anything as the welcome center that do anything, ask for more than I have to give and literally will take a dying mans last breath, complain and angry cause cant a 2nd one then in major drama for rest of their whiny damageed selves that just for their selfish gains to complain how they tryed so hartd to help and save my miserasble life I live fine in. However anybody I let in is potentially harm like being exposed to a virus always; not one person here has ever not done and after I wasted time and energy I dont have, explaining some things and why it critical to my life literally but Id be happy somewhere that I can just live without predators invading me and causing me undue stress.

After 15 years ur amazing like I believe you are; or yoyur either past that stage that they done convinced you you lucky to be blessed by others presence to take from u cause TBI nuts r made to feed them lol then ur totally without cognitive abilities lol just kidding.

Your Post was more correct than my reply I know but not gonna check it. Im skipping class to read about these various associations for TBI patients. Some made me angry and some I liked which this group i did like and I joined one that actually is totally unaware of what TBI patients have to go thru for simple tasks. My grammarly just told me rewrite a sentence but cant lol it ruin my therapy and i missed class so it be myt way of handling life.

Stay awesome Angela! Would love to know about that region in the US that ive considered moving too.

.

Hello to Everyone,
I have been trying to get out and about for a while, a long while it seems (just this last two weeks- feels like 4 weeks) . I hope here that my loved ones can learn a lot about these things all of us go through, I hope they will eventually want to stick up for me, and its my hope that I can start doing my part to help others again. A "Re-Purpose of Life", it is my prayer for everyone that the Bridge of Understanding bridges Miles of Heartbreak, Misunderstandings and Unforgiveness, as well as Confusion about all Neuro Issues, also my prayer for all people with all Medical Issues. (I also have to Forgive the man in the red SUV that ran a light- this is the beginning of healing- I a lot of times think I did, however from time to time I move a whole Bridge behind, and find myself back in the darkness once again.)

sorry lately I have been trying to remind myself not to move backwards, however ( I also need to remind myself that I am probably still getting over the Holidays, and to still take some more time to Recover), a lot of Tea, healthy Protein packed foods, some fresh foods, as well as a little chocolate :) :) :)

I donno about all of you, but I forget to eat somedays, and it takes me all day sometimes to realize it. So I hope I will help people with some of these issues, and it helps me to pay it forward, I also know it is so helpful to go to group, and to get out and about sometimes. It took me a while to enjoy getting out and about again, however somedays I find myself enjoying things again :) Prayer and Devotionals help so much, and keeping these New Neuro Pathways going in a good way.

My Prayer for 2018 is for Compassion and Understanding to warm and shine on the pathways for us all, God Bless America, and the World we all live in,

sincerely,
with a Hopeful Heart,

Angela in Colorado

My Prayers to you as I know what your going thru but to my surprise your going on 15 yrs? and your still recovering? i'm going on 4 yrs and i'm still pissed at this for i deal with same symptoms as you discussed at beginning as well as extensive memory loss as far back as childhood and people I've know my whole life. I've learned to focus on the hour at present and on gathering my skills again that I've lost in life wither professionally or personally. I realize it also has affected my intimate life as well which is probably for the better. I have to deal with neurological nerve damage extensive with spinal damage and TBI. Any change in the barometric pressure will trigger convulsions, and tightening of the muscles in the jaw/throat, and neck region that alters my voice and body into a handicap person. I had to move back home for help with daily life on bad days. I sleep long hours. If i'm not at work which is a therapy for me i'm home in bed and i can only drive short distances. you've mentioned about being "a mystery to your own self" "AMEN SISTA!!" and yes stressing out on your very own frustrations exactly what i'm going thru. What i also feel is as if I'm a burden to my family cause i can tell i'm frustrating to them. I've had many people turn there backs on me including family due to this but i figured i'm better off for i'm too concerned about my health to care. what kind of help or "therapy" you do to help yourself?.. outside of any medical help? for me i look for jobs that will help regain my many lost skills such as cooking. it's weird how your body knows what to do yet your brain doesn't which is y I've learn to follow my body and listen to my instincts. i do it slowly with cation but it's not led me astray yet. lol.. I also read which is a hobby, I exercise as often as i can even if it is short. the one thing that I've been able to do is watch the same movie/s back to back and not be able to recall anything in it knowingly I've just watched it. I hope to correspond with you soon. thanks again for your story it helps me with i'm not the only one coping with these.

Hello, I did try to respond a few days ago, however I think I pushed the wrong button, I clicked on the wrong one, (it erased what I wrote)

Hi Everyone, I once in a while can tolerate the computer screen for short periods of time, if I am on to long it sets off some of my issues, "Migraine Like Headaches"

I understand about Memory issues D, and I am currently waiting for one of my "Good Days" I try not to over do it on those days, I think I am regulating a little better these days, I appreciate everyone's sharing on this difficult issue.

I am trying to enter into "Re-Discovery" phase in hopes of getting back some things that I have lost, I have learned I have to pace myself and do step by step, if I try to do to much all at once I end up feeling a few steps behind sometimes. I get frustrated sometimes because I see what I want to do and try to get my Goals finished, however the limitations associated with TBI slows me down and it is very frustrating. I am learning, however that if I get frustrated it sets me even further behind ,so currently working with my Dr. on working on Realistic Expectations for myself, and often reminded about doing things step by step. REALISTIC EXPECTATIONS of 2018 is better than putting all that pressure for New Years Resolutions. One of mine is Patience, patience for myself as well as others. Patience for the accumulation of my effort to be seen by others , and patience for time sometime, Just to be still sometimes to reflect , Please know others go through these frustrations, and you are not alone. I would hope you have a Group in your area, mine is kinda far away, my Realistic Expectation for myself is to go atleast once a month ( for a while I was only going every 3 or 4 months), I just try to hope that the day (4 or 5 times a month) that I have energy will line up once in awhile with the day that Group is scheduled and so I eventually was able to increase it to once a month (sometimes twice a month :) I am working on making it to Creative writing this next month and Art Museum (I am trying to learn not to get frustrated with myself if I don't make it) . We can build on the building blocks and eventually see the progress. Human Connection is also very important.

Thank You for responding , just make sure you push the save button so it posts correctly, HAPPY HOLIDAYS, and HAVE A WONDERFUL NEW YEAR! My Prayer for everyone is to create Realistic Expectations for yourself and also for Loved ones to better bridge the gap with Understanding, Love, Compassion and Empathy,

Thank You,
sincerely,
with a Hopeful Heart,
Angela in Colorado

I can not believe how this article just pin pointed out so many of my symptoms. I really like this page.

My sister has 9 brain aneurysms some have been tied/coiled etc. My sister had a massive bleed back 5 years ago and the doctors didn't think there was 20% chance of survival but she became his first to have 9 and still here today. She lost her short-term memory and her life change enormously. She does have bouts of depression due to her strong seizure meds. Headway helped my sister hugely and her life is still a work in a progress. Thank you for this it does help to understand more.

May 26, 2008 I suffered a sever TBI while traveling in Europe. I had excellant medical care followed by five years of intense rehab and still today I find myself struggling to stay focused, remember words and rembering what I want to say when talking with friends. I still studder which makes matters worse. I'm in Theropy with hopes of getting more comfortable with my condition. Its not working.

I suffered a brain injury 15 years ago (a low blood sugar episode where I wasn't found for a few hours after losing consciousness). At first I couldn't remember anything longer than a few seconds but with therapy that improved. I have a loving family and great friends who did everything in their power to help me. My older brother even went as far as to stay at the rehabilitation center with me because I was uncontrollable and the nurses feared me (my apologies dear nurses, I was not myself). I still struggle everyday trying to remember new things and controll my anger. I know I will never reach the potential that I could have if I hadn't suffered this brain injury but I cannot change the past, only the future. Sometimes my brain fills with sadness that turns to anger. I was 23 when this happened and for a long time everything in my life was thought of as either before my brain injury or after my brain injury. I didn't lose my ability to figure things out, in other words I know I am still a smart guy with potential, but remembering specific details and conversations or directions is very, very hard for me. It was almost impossible for me to relate to people what I was going through. If you or someone you know is having symptoms like mine and you feel lost or they feel lost please contact me at lumpydumpling@yahoo.com (I had to create a new anonymous email address for this. It is real but I am doing this in my spare time so I might not respond quickly) I felt like I was the only one going through this for a very long time and I would love to help. This is a very scary thing you are going through. You probably feel like you are walking in the dark toward an unfamiliar sound, please let me be you flashlight. I am not a trained psychiatrist but I can relate more than they can. Best wishes and don't go through this alone

Hi, my name's Nicole I am 19 years old and I had a TBI going on two years ago, from an auto accident. I had a brain shear, which basically severed nerves in between my brain lobes. I was in a coma for a while and then spent awhile in rehab. I was very blessed with my outcome, doctors can't believe it, but that doesn't mean I don't struggle with a lot people don't understand. The first year was so hard, especially since my life went from being a very social young girl to some one I didn't know. Something I struggled with a lot for a long time. But I keep going up and down and emotion/mental feelings I don't understand. One I have struggled with is the feeling of not being a person....I don't even feel like I can communicate my emotions how I want to. I can't express how I want to. I know I overuse my brain a lot considering my condition, and I really think it is making my mental state worse. I am really just asking for other stories from TBI survivors who understand more than my psychologist does. Just about how you have helped yourself and pulled through, and what you went through. I would appreciate it!!

Hang in there. My tbi was 15 years ago and I still deal with it on a daily basis. For a long time I wasn't myself but then I realized that we all change over time and I am just the new me. I personally have a huge spot for you in my heart because there are so few of us who are going through this. Life is difficult but being that you found your way to this website and had the courage to post something tells me that you will be okay. If you need someone to talk to you can email me at lumpydumpling@yahoo.com

My TBI was 21 years ago. I wish that I had known about all of the support groups that are available. Thank you for everything. I currently teach, I made an Almost full recovery, according to the doctors, but I know that I will never be back to my original self. I have made peace with it.

Labor Day, September 3, 1979. Since my accident and all the physical mental and spiritual healing that occurred. I am still struggling with self-perceived and real inadequacies. At the moment of impact and subsequent breaking, severing a telephone pole as a passenger in a Volkswagon I was relieved of all future responsibilities. My life was turned over to a higher power. I was not in control anymore.

I consider myself fortunate to survive a 12 day medically induced coma and blessed with the ability to recover physically. Mentally I am always trying to prove to myself that the correct choice, the logical choice has been made. I struggle with short-term memory loss but can tell you things that happened in my high school of 5,800 kids!! 45 years ago.

I was told that the "real Mike" died in the accident. "If he lives he will be a vegetable", my mom quoting the doctor. I had to start over. So I did.

I went from a vegetative state to a complete physical recovery in less than a year. Rode my bicycle 65 miles attended 4 classes at a university. Reapplied and got reaccepted with a full scholarship to a west coast University.

I believe I was meant to survive for (a) reason(s) that are being identified daily. It has been difficult to accept that I am different from others. But we all are!!!

The terms "Head trauma" and "TBI" have legitimized the reality of those who have encountered such situations.

I encourage and reach out to those who are struggling to accept themselves or do not notice any differences to "keep on trying since it could have been worse".

Find something good that happened to you today and hold onto it.
God is the planner!

That is so good, Thank You and so good that you are an Encouraging Light for others. Yes, and I am still currently learning about Our Heavenly Creator's Plan,

I am in the Re-integration phase, having issues that are many times out of my control, and so in this process I have moved a few steps ahead, (sometimes a few steps back, however I have seen some accumulation of my effort). You are so right about "finding something good that happened to you today and hold onto it".

Thank you for your Awesome Reminder,
Blessings and Peace to you and all,

Sincerely,
Angela in Colorado

I agree with you completely. My injury was 21 years ago and well.

Hello Nicole, I had a double brain aneurysm in early February this year 2017, I'm so pleased I found this page, one thing I am learning is to be patient with myself, I was so used to doing everything bang straight away and stick to it till it was finished, one friend used to say I did everything at top speed, eating, talking, walking, driving, working, now I can't even think fast. I visited our local Health 2000 store and bought some Enzo Brain Recovery support must admit they helped lift the fog. When I get tired I stop what I'm doing and have a sleep, bliss, wished I'd done this years ago, does make a difference. I'm just coming to terms that I may not function to the same capacity that I used to. I have all my faculties, am driving again, do my own house work, and care for myself, even though sometimes I may not feel like it.
And having a great friend that supports you Is the best I call him my handbrake he has been truly supportive.
All the best Nicole, as you say it's all about you, retraining your brain, sometimes I tell my friends " that's it I've had enough I'm going home" most of them are pretty good and understand.

My boyfriend of 3 years had two strokes at 52 years old. We were living together. He is not the same person. Says he doesn't love me anymore.. why does this happen? So he's moving out to live in his parents downstairs apt. He can't walk and needs help with things. I have been his caregiver for 10 months now. I cry everyday, It's like he died. I'm trying to understand all this but it's very painful

Hi Karen, Please try and remember-Know his circuits are screwed up! Just like if his leg was mangled...time is needed to heal! As hard as it is...keep your Love/Friendship AND take care of you. I hope you have family-friends that share love for you?! I know this from both sides...I have had TBI's and my boyfriend of many years had one by lightening! It tore us physically apart for 4 years; yet as we healed separately we came back together! I don't know, as you don't what your future or his holds; but learning what you can...and finding ways to care for the pain, frustration that is present...will make you stronger, more compassionate (as you are already ) and an ally-asset to others you meet and him...in the scheme of Life! It is not easy! Many left with lack of understanding! Please Listen to your Heart for what you need! Wish you both Healing...Luv

I need help. It has been 30 years I've run from my TBI. I have had many breakdowns I started learning about the real effects of my brain injury 2 years ago. I have tried to teach and tell family, they just don't care. It's hard to explain you are never sure and second guess yourself all the time. That what is simple to them like choices is very hard for you. You are told you look fine explaining what happens to you all the time you hear that happens to me too or everyone loses train of thought, or I have to nap to... It's fustrating because they really don't get it. They compare themselves to you yet have no clue that in your head is like scribble signs. I'm sick it seems as soon as I get back up -maybe body gives out on me. Everyone thinks I haven't tried in life. My daughter says I need to get over my TBI and I've tried for 30 years not realizing t its a forever thing. I find as the years have gone on my body has broke down each time it's harder to get back up. I've been homeless and abused. I'm alone all the time because I just no longer trust people. I feel like it doesn't matter if I exist or not no one will miss me. My family doesn't want me around. I'm just a bad memory for my mother 2 out of 3 sisters barely talk to me. My brothers one is to busy and the other as also suffers from a TBI no one has taken the time to understand either of us. We both feel the rejection.
I just want to say to family of TBI Survivors you matter in how your family member heals. Remember they didn't ask for the brain injury it happened to them. They are navigating through a storm with a broken compass Be the light giving them direction to reassure them love, safety, and give them a place to call home in your heart. Don't leave them behind they already feel stuck and have low self-esteem because of the BI. Those of you who are care takers God Bless you. You are the reason that person will succeed. Those of you who have shut your door or can't be bothered shame on you, what if you were that family member? Where ever they are lacking instead of talking about them help them guide them and watch them fly.- everyone needs someone.

I can relate and tell us how we can help. My injury was only four years ago but people started running out of my life as fast as they could, or that's how it felt. Living with this cursed invisible illness (it's not an injury as far as I'm concerned) has had its moments of hell. It's getting easier and better in some ways but not without a lot of hell.

Hi... me too... 30 yrs ago... life seems to be more trying over the last 10 altho I had many issues over the 1st 20 i know I was never properly treated for the real issues as they stemmed from the TBI... that was never actually addressed Iam finally taking control with a dr who specializes in TBIs yet most issues I'm not sure of if they will change and I've already learned to cope with
What you've said about family is so true and it applies to others too... people don't understand... we appear ok from the outside and since the injury was so long ago we are expected to be fine... yet we have so many reprocussions others just don't understand and are labelled incorrectly... even if we try to explain only some may somewhat understand and then some who do they only do for a short while then forget or they just think we should be over it in time
And at this stage and in this world with so many even family being so absorbed in their own lives God forbid asking anyone to go out of their way and read a brochure outlining the basics... it's practically inevitable things won't change... unless we can somehow stand up and make that change!
Look at the recognition Susan G Koman made to breast cancer awareness... hopefully we can make a difference for others if it's not to late for ourselves by doing something so prevalent?
I'm new to the group and need a purpose... at 55 I've been out of work for 10 years due to fibromyalgia/TBI-related issues and have stabilized to where altho I'm not sure if I can do it full time or even at all unless I give it a try I have appliapplied for assistance for reeducation opportunities to reenter the workforce yet I don't know in what capacity yet...tbd
I'm too young to have this keep me down altho I'm sure if I don't push I could remain as is but I am just existing.... even if i can volunteer that would help... especially to spread knowledge of TBIs!
Let's keep positive... and the neck what others think... but if they say we're lazy or should be over it lets be knowledgeable ourselves and inform them politely... perhaps they'll learn

Hello! I have had many TBI's since a child! Most unrecognized, and even some So "incidental" with no outside wound-scar, that I never had rehab, never professional help and really no understanding of the invisible thinking challenges! No one gets it and/or thinks I am lazy-unfocused! I could scream yet I don't! I think from my Heart, do my best and yet clearly judged by even the two most close to me that I am not a financial success! It saddens me. People-friends are lost, nowhere! My connection with animals, nature...my own stubbornness and sense of purpose, let alone adversity to taking drugs...my saving grace! I feel people's-animals energy! Since young, a blessing and curse! Yet, no one knows-cares-understands how hard normal things are for me because I look normal! I share this because you are not alone! We: those with TBI, become aware in each our own way..on levels that those not affected cAn not fathom! I have helped-spoken to many as an Artist and Know fanning the embers of Our Soul-Spirit is crucial! I have a thought...a Project that has come out of your sharing and others' tonight! Thank You! Purpose with Heart Passion is necessary when the circuits of thinking are sketchy! You made a difference on my dark night! Hope the Light shines back on you...others! Luv

Don't give up! Find people who understand. Have you tried a support group for brain injury survivors? There is a Brain Injury Association in most states with lists of support groups.

Barbara

It's been 13 years since my TBI and I think now things are starting to happen with me. My bone flap was left in due to being absorption and a cap was made to cover the wound. I'm experiencing things now and wonder of the pieces of the flap may be contributing to my problems.
Anything would help right now.

Great article. Very to the point for all of us who have suffered a tbi... Hugs to all of you!!!

Hello,
I feel so jealous that most of the posters are doing so much better than my son. He had a subdural hematoma that required 3 surgeries. He was in a coma/vegetative state for 7 months.

He is still unable to walk. He is incontinent. He has a memory span of about 8 minutes. Every 8 minutes, he forgets what he has been doing and saying. He has difficulty with expressive speech.

The upside is that he understands that he was severely injured and that he is much better than he was 5 years ago. He is always happy and isn't angry. When we talk about this he is always saying, that yes he got hurt but he is slowly getting better. He doesn't give up.

There aren't many articles or postings about those who are this severe. Maybe others seeing this post may see that although the struggle is very real, that others are struggling even more.

Keep fighting!

Susan

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