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

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. ...

My brother looked good on the outside but was in cognition classes for 2 years....it's like a bag of pieces of a puzzle all mixed up but all there so it's learning to match the pieces of the puzzle ....so you cannot place a time frame on it.

So many of these are true and hard to explain to others. It seems as though they read more of the pamphlets from the Dr office and then just say I know I understand and they don't and I wouldn't wish on anyone.

Recently found out I had suffered a TBI in 1989 after car accident but have went thru hell since no treatment for TBI just surgery's but 25 yes later I am still dealing with everything you said so nobody knows what we go thru but was told everyones brain is different .Wish you well.

This is exactly how I am, but no one will listen to me, the doctors and psychologists and psychiatrists say it is lingering PTSD and depression. They won't acknowledge brain injury to help me, they say if it was brain injury that it should be cleared up by now. I've been doing all the work on my own with no help and understanding and as I'm typing I am crying cause I need help because I feel like I'm going crazy and just want to give up.

Its like you took the thoughts that I have been thinking for five years now but just couldn't put it in words. Perfectly written.. bravo

I don't know how to carry on with life. I've had an AVM in 1996 and a TBI in 1998.

Perfect!!!!!

This is perfect and if i could just print it out and hand it to everyone in my life that'd be perfect. I think my biggest problem still today is people not believing I'm sick because I don't look sick, after 16+ months i promise I'm not choosing this. Also the more stress I'm under the less I remember so please take it easy

Jenny, Sept. 13th, Please contact my publisher, Marilyn Lash about translating into French.  

 100 Boardwalk Drive, Ste<span style="\&quot;line-height:" 1.6em;\"=""> 150

Youngsville, NC 27596

www.lapublishing.com

tel 919-556-0300

Barbara

Suzanna, Sept.29th, Please reach out to the Brain Injury Assoc. of Maine.  #800-444-6443 or biame.org 

BJW

Short, straight to the point and educating. Thank you.

Author from Mikkeli, Finland Kati van der Hoeven 40-year-old ex- super model whose career was cut short at 20 years of age when she suffered a stroke. Because of the stroke orders no longer, go from brain to muscles.

Her thoughts were still very clear but even muscles needed for eating and talking were paralyzed. Van der Hoeven has been trapped inside her own body since the stroke. State like this is called; Locked- in syndrome.

Van der Hoeven communicates through her eyes. She works on her PC with a special program, small reflecting sticker is placed to her forehead. A web cam like infrared camera is placed above her screen and a small reflecting sticker is placed to her forehead, this is her computer mouse. With this, she is able to communicate with her friends via the internet, and keep her blog and write articles for magazines.

Kati has not let the syndrome prevent her from living. She has gotten married in December 2014. She holds dinner parties, travels, goes shopping and to the movies. Still cares very much about her looks. She is very interested in Japanese culture. She even studied Chinese and Japanese cultural history in the Open University.

All this requires willpower, patience and faith in life.

For instance morning routines take so much more time nowadays but just because I´m so determined I have managed to keep my old ways. I want to look good no matter what the situation. I guess you could say that this is my one way of fighting back and not giving in to somberness and depression.

Big part of Kati´s day goes writing. Only therapies, meetings and going to downtown break the day. Evenings she is with her husband.

According to Kati the secret behind the people positivism lies in the fact that the patient really takes her / his time to deal with the sickness.

You do not have to go on with life impassively and it is ok to feel sorry for what you have lost. When you have really dealt with what happened and you have accepted your new reality, you will find a higher kind of happiness and joy. With this your will to live will become even stronger.

Kati says that the more you appreciate life the deeper you go. She reminds us that it does not help anybody if you keep living as if everything revolves around the sickness. There certainly is life after sickness and you just have to go and live it. http://katilepisto.fi/en

For Suzanna, It doesn't get any better. My partner has had a brain injury since he was 22 years old. he's 61 now. People treated him like a child, his family used him up, and made fun of him then cast him out to become homeless. Lucky we knew each other from teenagers and when I found him I helped him and he lives with me and has done for the past 7 years. It is hard, no one understands unless you are directly involved with a person who has brain injury. It isn't a broken leg that heals it is a brain that we rely on for everyday thinking and working and functioning. 

you sound like a wonderful mum who genuinely cares for your daughter. Do as much reading as you can about how to help her, go to the academic journals through libraries read and write about your experience and your daughters. Search out brain injury support groups of like minded people. It isn't easy and just know that there are a lot of us out in the world who do understand and who do care. 

Christine

Thank you

Me ayudo mucho esta informacion. Mi hermano sufrio un accidente y tubo un severo golpe en la cabeza y fracturas en las piernas. Ya salio del hospital y esta en casa, mi madre lo cuida no pudimos llevarlo a una rehabilitacion porque no tiene aseguranza medica. Es lo peor que nos a pasado es como una pesadilla no lo podemos creer. pero el en este momento tiene cambios de actitud y no reconoce ami mama ni su pasado solo algunas cosas. Si es frustante pero se que lo va a superar el tiene 26 anios y es papa de tres hijas.

I've had a brain injury for almost 14 years and it hasn't gotten any easier for me. I have a husband who has complex PTSD and it's very hard. I have to put myself last most of the time even though I can't cope with things myself... Trying to figure out how I'm supposed to cope with this life.

Please join our Facebook group "caregivers and parents of Post concussion syndrome." Having a community of families going through it really helps. My daughter is 3 years out, and still takes 2 medications. It can be a long process.

I work with all kinds of brain related people its a very rewarding job when people start to respond to rehabilitation the brain is a complex thing takes time and patience but in the end its amazing how it can repair its self

I'm searching for help for my daughter,19,suffered a "mild traumatic brain injury" ,4 years ago.She was 15 and everyone kept telling us to be patient,it'll get better.But,it hasn't.She's struggling,isolated,frustrated and much more.I am a single Mom,who's had Fibromyalgia for 15 years.I know what it feels like to have an invisible illness.But,I have found my inner strength and gotten my life back( 8 years now).Nothing compares to the pain of watching your child suffer and not knowing how to help or if you're doing the right things.

We live in York,Maine.I'm hoping to find support for her and myself as well as my youngest daughter,who's 17

Hoping someone will see this and help me...my daughter says "she just can't do this anymore" 

GOD BLESS,

Suzanna

This is so helpfull to me and describer most of my problems and I'm sure can help my friends and family cope with different things that they think are just me. I love that you understand and I'm not the only one out there because it sure does feel like it. Ive been thinking about going to a brain injury group and this article has helped me make my decision. I feel being around people like me may make me feel more apart of this world not just an inconvenience to my friends and family who have no choice but to put up with me. Thank you so much other survivors!!!! Matthew Rayner

I wish that my friends and family could read this because it fits me perfectly and I can't explain it to them. Thank you for writing this article.

Wow!! This was helpful to me. Mirror image of what I've been trying to get out of my mouth. I'm just starting the doctor pass me around process for multiple concussions. It's hard to get things clear where they understand me. I will show it to my doctors.  Thank You so much for SHARING this article.

Beautifully written, clear and explains well. Well done and thank you!

I'm an english brain injury survivor (medical errors) and would love to try to translate this into french because I now live in France. Please would you allow that if I credit you with its creation? I might think of more - but I can't do lists nor keep concise like you! Many thanks, Jenny.

Hello my name is Rudy Maddock. I have a brain injury also. My life is wonderful, God is so great and has done so much for me. One thing that I see is every or most are very different. Not all injury are alike but all have God that's why were all still here.

I want to write my own book - I have a lot to say, since I am a "survivor" also. Although, many times, I feel as if I'm doing just that - "surviving"... !

I am a survivor and reading this feels like my own words, well written.........❤️

I suffered a brain injury in 2008, had 2 brain surgeries and then another for my epilepsy. Having read this article, I now know that not only am I not alone, but that lots of people have similar symptoms as me. I am still learning new things, and sometimes re-learning the things I've forgotten. Thank you, that's all I can ultimately say.

Such great information and advice !

Everybody that DO NOT have brain injury needs to read this.

This is great and so true!

I'm a survivor from TBI it hurts but there is nothing that helps, but on April 21, 2010 changed my life forever! The Auto Accident change my life forever but I have to continue living with problems from day to day! :(

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