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

I had a brain tumor removed from my brain stem 54 years ago. I woke up a human vegetable I was blind and could not do anything but hear. It took me over two years to mostly recover but have dealt with aphasia and balance problems ever since. I have had a wonderful life, married had two children and a great life. My children grew up supplying words when I couldn't find the right ones. Now my grandchildren say that they can speak grandma too. Mostly when I am tired.

This is really very interesting to me. This sums up my experiences, which have been getting worse with time. I didn't have one specific injury, but as a result of clumsiness and recklessness, I've had nearly 10 concussions in as many years. I'm finally seeking treatment for my anxiety and panic disorders(almost always caused by over-stimulation) and my provider suggested Post-Concussion Syndrome. I plan on seeking advice from a neurologist, but I want to cry because this makes so much sense and it feels like I finally have an answer that has eluded me for so long. Thank you for this. 

My brother in law is brain injured. Love him to bits. Another thing that occurs to me though, on reading this, is how much it reminds me of dyslexia. In many ways processing is time consuming and affects my ability to cope in similar situations. Of course, not to this extent. But I thought the similarities might have a basis from a biological science point of view. I'm dyslexic and suffering from stress also because the people I worked with did all the things the article says not to do. But they knew what they were doing. I'm currently suing. My dyslexia mainly revolves around short term memory problems. I also can train my brain but also forget basics not done regularly. I have to think through very basic things with great care sometimes. I related to a lot of the points in the article about processing, tiredness, repetition and emotional ability. Brain injury is misunderstood. I've seen my brother in laws condition misrepresented at mental illness in an court case with appalling consequences. And it's so obvious! Dyslexia is also hard to understand and I've suffered as a result. People can't accept what they can't see. Anyway, I just wanted to say thanks for the article. Very helpful. Julie Prince Ilkeston Derbyshire

Truly beautiful ...

Every thing listed I deal with every day and night. I was in a motorcycle accident and got hurt very bad. emts said I was dead, Drs said no way I could live. I live with ptsd and a brain injury but I'm alive.

Well, find this place has been very interesting for me. I think there´s also other kind of TBI and is caused by pathogenic agents like virus, bacteria and protozoa, I´m a 35 years old male, in my case five years ago my brain was massively affected by HIV, generating me HIV dementia phase 4(nearly to death and bad forecast), that´s Alzheimer like, temporarily(six months) lost nearly all my skill, my short term memory, i came on wheelchair to the hospital, i could move me , i was full of spams, i didn´t recognize my family. Reading all the post i feel me identified with many things said here, many thing that i happen on my recovery, it was between 3 and 4 years oscillating between frames of mind, i was a kind of bipolar, with memory, coordination, speak, movement problems, it´s sooooo hard, finally i´m nearly ok, if you see me you couldn´t say all that happened to me. I feel that my personality changed in some areas, i feel more lonely, some kind of proud about survive to all this by my way, work is not the same, the routines are not the same, i initeriorized a kind of double stigma HIV and a TBI like at hour of romantic relationships, this area has been the hardest, too ´cause after my illness i have had libido problems, loss of desire, impotence, loss of interest on same sex(i´m gay), my endochrinologist told me that possibly is caused by hipocampus damage in the libido area after see my MRI. A great medic friend told me that give me time(but has been five years with little improvement), ´cause in my case neuroplasticity has made wonders, but i miss so much sexual area. I would know if there´s any kind of hope about libido return. Thanks for read me

My husband suffered a TBI in June 2012 from car accident. The doctors told me he would die that fateful night. It has been hard to witness a man who would love gardening to clicking the remote over and over. He is so different and I wish there was more support for the caregivers. The TBI person gets the support and love..but as a caregiver for my husband and epileptic brother....really wish more support. Bachc1958@gmail.com.

Hello everyone I am a brain injury survivor was hit by a truck on a highway at age 11 was found dead for three hours and put in induced a coma doctors said I would never wake up and if I did no chance of me living properly. I woke up not knowing anything had to relearn everything doctors said I would never walk again, but I did people have told me every one of my goals was going to be impossible because of my TBI but I am a professional musician, rapper, computer system repair professional, published poet and public speaker. Even people who have a TBI, or other injuries can do amazing things I can relate to how hard it is to believe in yourself, but as a survivor to others like me just know we are all miracles that can do anything

My little girl suffered two TBIs four years ago at age thirteen during brain surgery. One of them was a stroke which initially left her paralyzed on her left side. She is severely autistic and non-verbal as well. She has recovered a lot of movement on her left side, though she walks like Quasimoto, and seems to have frequent headaches. She has poorly controlled seizures, serial episodic vomiting and often stays in bed till early afternoon. She is missing part of her skull which they were unable to replace because of complications, so she wears a helmet to protect her head. Reading these stories gives me more insight into how to help her have better days. Thank you. Is anyone else out there walking around without part of their skull?

PERFECT LIST! I've been accused and treated as though I'm healed now and it drives me nuts! The stuff on the outside- that's the physical right? everyone expects me to be healed and fine (17 years later( just because the outside is healing and much less obvious than say when I was in a coma! But they'll never have a clue about the s*it going on in my head! lol This list just says everything so well and focuses on where the problems really are- in my head! Printing this and framing it!
All the best;

Tami
tbiretreat.wordpress.com
tamaragilford.com

Thank you for sharing. I struggle with contraction and focus with too many noisy things going on around me too.

Thank you Thank you Thank you - this article describes EVERYTHING I've been facing since I had a sub arachnoid hemorrhage in December 2014 - I feel so alone in coping with the issues - and the Dr's keep saying it's all normal, but until reading this and all the comments I had a hard time accepting that.  My main concern is they can't tell me why it happened so how do they know it won't happen again.  But knowing others are facing the same symptoms does help me not feel so alone.

Almost three years ago I fell onto a hard tile floor due to an absence seizure and severely injured my brain. Taken to hospital by ambulance and was in an induced coma... five weeks in the hospital. Finally the problem was diagnosed and the correct medication prescribed. I quickly came to myself (sort of) and was discharged. Off driving for a year. I cannot remember many things from that period, so my family filled me in. I still have memory lapses and I think I am still on the slow road to my normal self. Many thought i was not going to come back when I was in hospital. God is powerful in this. I continue on my road to recovery. This article showed me what I am going through is what I can expect. My prayers continue.

TBI ... you only know it if you live it

I want to add recovery never ends no matter how many years pass. In my case I have very little pre severe closed right frontal lobe tbi memories at all due to my head injury occurring at 9-10 months of age about 25-26 years ago ( in the age range with the highest fatality rate ). The fact I have memories from before at all is due to hyper development of my brain prior to the injury resulting in a cognitive age of 12-13 when the injury occurred. The only reason I survived is theorized to be other abnormalities in my brain that minimized damage, and excluding minor behavioral issues and difficulties with soft social skills and short term memory I have recovered very well. I had years of therapy though and for two years of that I could not articulate properly and was " trapped" in my mind and suffered from suicidal depression by age four. All these years later articulating my thoughts into words can still be an issue and I still fumble words on occasion. All the tips on this list represent what people should know at minimum.. Sadly they don't and getting them to understand can be a pointless endeavor. My injury has been with me my whole life more or less, at 26-27 the thing I notice most is people ( especially family) still treat me like a child, or a freak because I am different and can never be normal because I never knew how to be that way in the first place. Even my friends notice my oddities many I can't control and try to " help" me unaware that I have spent my whole life coping with these issues despite my explanations. If I could have one more thing added to the list it would be : Don't presume I am stupid due to my head injury, don't think I lack comprehension of what it has caused and changed in me, and never tell me my tbi is an excuse or not the cause of my behaviors when I know it is and exactly what it triggers. And never point out how abnormal I am because I am fully aware of this, and it kills me inside some days to know that I never had a chance to be normal, just imagine what that is like.

I had a Closed head injury in 1990. I have progressed mentally. I am still in a wheelchair or walker. Reading all the success stories has inspired me not to give up!

Tony

so good that this is reaching so many people 

I had a craninotomy and radiation. I thought I would be my old self in 2 weeks. Was I wrong! I need to be patient with myself, and realize it is going to take time to heal, and that this experience is different from any I have gone through. I need to respect my brain, and treat with care.

My 37 yo daughter had a prenatal stroke which resulted in her having cerbral palsy and which has impacted her mentally as well as physically.  So many of these points seem to be true for her also.  The article gave me a lot to ponder.  Maybe if we were aware of these issues with her, her dad and I would be more patient and understanding of her needs.

This is interesting. I had meningitis ten years ago and ask questions over and over again. Even though deep inside I think I know the answer I ask again for reassurance. It's very difficult having to second guess 24/7

OMG--Reading this article was amazing...I kept saying to every line....Holy Crap, that is me. I was involved in a Commercial Vehicle Accident on 11/13/2013..ejected from the vehicle, flew airborne into a concrete bridge post, was knocked unconscious and required (37) staples to put my head back together. I will, like commented above, print and hand out this article to every person who is a part of my life. Thank You.

It took me a 1 1\2 years to see this. I carry copies of this with me and have handed out more than 200 copies, and I will continue doing this until I'm comfortable with life itself! 

last week my boyfriend fell and he hit his head so hard and was knocked unconscious and was revived at the hospital and was told he was going to have short term memory loss . And now doesn't remember anyone but his young sister...,it breaks my heart....,not knowing if he'll ever remember again.

My son had a car accident not wearing his safety belt on 1 jan 2015 i am still here with him in the hospital never leave hes side has open he's eyes track people when they speak to him he move he's feet n legs hands but still don't follow any commands still cant stand or walk. But i have hope and faith he is going to be ok

Please hold hope and pray. Our son was never expected to survive and he is our miracle as we are approaching 3 years post accident. Life is never the same but it can be enriched. It takes time, patience and faith.

My husband is a resent TBI Dec 22, 2014 our world was turned upside down. Doctor's call him a miracle for just surviving, they didn't expect him to. I know him and how strong his will is. He was trying to help me be positive for I have lupus n would tell me he was my Super Man My Man of Steal. So every day while in coma, I tell him come back to me My Super Man fight and squeeze his hand and he would squeeze back. Doc say don't get my hopes up that he is not responding to me. I have faith he is hearing me and responding to me and 1 day My Super Man will come back to me.

So true! I have a tbi from 05. Was in a coma from us two . I had to relearn everything. every bullet point matches my the symptoms

Oligodedroglioma grade2 dx 5years ago, expecting its return ANYDAY...doctor say when it regrows I'll get chemo/radiation therapy. My life has not been the same since that day when the onset of a seizure and the dx of a cancerous brain tumor. This article really does help explain where I'm at with it all at this point ... Short term memory loss, depression, panic/anxiety attacks, the chance of grand mal seizures, personality/mood changes, not being able to multi-task, I have a gaping dent in my skull, and..my balance has went to hell. I used to be an excellent reader, scrabble player, free thinker and had a job earning a meager living. None of that applies now. I'm looking for the new me...the after cancer me.

Omg you literally just summed up my whole life!! I'm a brain tumor survivor, 6 left temporal lobe surgeries '91-'07 I struggle every single day with short term memory since the day I was diagnosed with epilepsy in '88. I'm seizure free since 10/'06, but life will never be easy for me!! I'm 33 yrs old, and still trying to find a career and independent life for myself, sometimes life just sucks..

I had a double brain surgery at the age of 15 and the next year that I went back to school it was like no one knew I was gone and my friends all left me. Having brain surgery was the worst thing that ever happened to me and I suggest that you don't get it at a young age

Wish I had seen this article three years ago when my daughter had a car accident and suffered a Sever Traumatic Brain Injury - she is now 24 years old and we still have good and bad days and there is a lot of things I would of done different with her if only this had been made available to all families and friends of TBI patients. Thanks for sharing.

Really helpful. It puts down in words and explains a little why I am the way I am. It's been 10 years since my Abi. Most people who only know me since that time, don't know what I was like. And how Well I'm doing now. I can be hard work but im worth it. I still have a lot to give :) Justin

Really nice article you write, very inspiring all to life ...

I still have really bad days but 90 percent of the time I'm ok and as long as I do things the way I can and laydown every few hours to keep my cerebral fluid pressure in check I'm pretty good. I have found that repeating what I am doing over and over in my head keeps me focused on what I am doing. If I talk outloud it's even better. I sound crazy but I don't care it helps me and there is less anxiety and time wasted. Writing it down isn't an option because I have to keep reading the same thing. Best to keep a one track mind until that task is accomplished. All things on this article are accurate. Some days are better than others. Playing charades in a conversation is about the norm. Sometimes out of the blue I can't remember my own address or phone number but my phone number from 55 years ago pops out clear as can be. It's funny yes but embarrassing. Time is what they keep telling me .... I hope that is accurate. I feel lucky in a way could have been much worse. Has anybody else had pain from loud noises like dogs barking?

Excellent article!  I wish this was available after my TBI, which was 19 years ago. No one knew anything useful back then, and I was bounced around at random to various doctors and therapists. I had no understanding of what was happening to me. I couldn't think of what to do from one minute to the next unless something happened to cue me, but if I got distracted I forgot all over again. I had no help from the medical community or family; my life literally fell apart.  It was three years post accident before it occurred to anyone to even put me in cognitive rehab!  There I had to learn all over again how to even use a calendar, and they had to show me how to put notes all over my house to tell me what I was supposed to be doing.  Anyway, I've come quite a ways but will never be the same. My doctor put me on disability, which was a Godsend. I tried to work several times but could never keep up, and employers don't have sympathy for disabled. An average day still takes great amounts of energy because those little things we do all day, that I could do without thinking before, now take ongoing thinking and re-thinking. People think I must be "fine" because I am intelligent and articulate, but they have no idea the energy it takes just make it out the door.  I will keep this article to validate myself when I feel down and start questioning whether I'm really "trying hard enough" or being "lazy", like others have concluded.

I see a lot of comments about feeling isolated and alone. There seems to be a Brain Injury Association in every state, besides a national one in the US. Also there is a wonderful Twitter group that is very understanding and supportive. You can send me a tweet @bmac2668 to get connected to that group. Don't give up! I'm over 3 years in an had some very dark days. Still have some but not nearly as intense.

Brain injury takes a very long time to improve. I know I am the mother of a brain injury survivor . Your loved one will never be exactly the same. The cruelest part is that few people really care unless or happens to them.

Awesome article.

You must know that encouragement and belief can take you as far to be better. You can have family members, therapist, church members, friends, and You to be encouraged.

This is a must you should do. Look at the SMALL things what you can do now than before but never look at big things you can't do yet.

It's good to have someone whom you can trust to converse, and share your thoughts. I need someone to be real with me and not always agreeing with me to see two sides of the situation.

Eventhough I have a therapist to help me, I still have to depend on me to be my own therapist on my own time. Yes, i can say can't because I can't get to comfortable with therapist doing all the work for me, I have to do things myself too. No one can't get me where I want to be besides God gave me abilities to do it, help from therapist and people and support but the results is You being the main character.

Thank you so much.  It is like the author's words speak straight from my heart in a way that everyone can understand.  I have bookmarked the article and will share it with my family.  So often over the last year have I wished to have any other kind of injury as long as it would be visible.  Not forgetting about something that is not visible is hard work for everyone involved and I get upset so easily when my loved ones don't seem to show the understanding needed.

Thank You this explains a lot and hopefully will help with my frustrations.

This is a reassuring article as to not having to feel as if we are the only ones who get disrespected in some ways. It is important though to realize that everyone tends to be a little different. There is a kind of subconscious thread about the importance of finding some sort of  peer group or support network which can at least relate to our challenges, even if not wholly recognize them. Please take a bow for creating this article.

This is the most helpful info to in the understanding of what a person with a brain injury goes through that I have come across. It is to be shared and I will. I suffered a brain injury during a fibroid surgery. I had major memory loss and cognitive problems that basically put me in a state of intermediate dementia. The worst part no doctor would acknowledge I had a problem. So, I struggled to live my life and keep a job. It took 6 years to get a doctor to even run a test. Unfortunately, he basically felt I needed to get more sleep and exercise. But, he did refer me to the best speech therapist who help me understand my condition and give me some options to help me with recovery. I still struggle on my own but gratfeul for every milestone and the fact I have a medical background.

I suffered a cerebral hemorrhage in 2077. I was put into a medicLly induced coma and needed a craniotomy. I lost pRt of my eyesight I spent weeks in rehab. I can never drive or work again. For the first year, I suffered from deep depression and considered auicide dIly. I was home by myself all the time. I had double vision. I had a hard time controlling my emotions, my family doesn't understand. I hate crowded places. I need to so everything in a certIn order. My family thinks brain injury is an excuse I use. I feel very alone,

So very true I'm 2years and I'm still trying to learn my brain some days good some days bad people will never understand us

The most accurate article I have read

There is a way around this... by the description you have not been told.... for most doctors dont deal in nuerogenics..your reactions are normal to the condition...and there is therapy to improve the condition. ...

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