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

This is such an excellent article and it seems to read my "mind". I was involved in a car crash and got a tree in the head through the door of an old corvette stingray which shatters as it is made of fiberglass. It wasn't until weeks later that deficits started showing up. I sunk into a deep depression, suffer from sleep problems which make brainwork worst. People outside my immediate family just don't seem to get it. It has been almost 8 years now and according to a recent neuropsychological testing done, I'm still at the same place. I have learned to deal with it for the most part, I'm on medication for the depression, anxiety, PTSD, and migraines. My life changed in a split second. I'm who I was before, just different. My husband says he loves his "second wife" as much as the "first". We've been married 33 years. Without the ongoing support and love of him and our 3 adult children, I wouldn't be here now. This is a great site.
This is a great article. I am 28 years old now, but I hit a tree when I was 16, as it came in the passenger door. I got a concussion from the tree on my right frontal lobe. I got TBI and have been slow since. Well, not slow, just how you described it in the article. I feel like it read my brainwaves, what ones I have left. Thank you
I SO CAN RELATE TO THIS..MY DAUGHTER IS 17 AND DEEP TBI SINCE 2007 FROM CANOEING ACCIDENT
Thank you everyone, that participate in this site; I feel like I am always 'work under progress', and understanding fellow challenged people's views is VERY HELPFUL! and finally, addition's towards a good attitude ....really is priceless~ David
FANTASTIC! - Its "about time" that someone got it right and finally wrote this down! I certainly could have used this in 1999. (year of my TBI) This information needs to be circulated to not only family & friends, but also to neighbors, employers and the general public. Brain Injury does NOT EQUAL loss of intellectual capacity! Thank you very much for putting this into a simple formate for others to understand. Hopefully with more of this type of education TBI can finally be addressed respectfully in our lives and communities. (TBI survivor aug. 1999)
This is great insight for loved ones of TBI survivors. My husband\'s injury date is approaching 2 years this week. After 42 years together it is a struggle for both of us to adjust to \" the new Jeff\". Through love & commitment the mantra in our house is \' this is a process\'. It took me a long time to gain the understanding that Jeff\'s lack of improvement was because he wasn\'t trying hard enough. We are in a much better place now that I have let go of the anger & have accepted that challenges God has given us. God has a reason.... & I trust that this experience was intended for both Jeff & I to grow. We are growing! The best statement I ever saw in writing ( & it\'s taped in a place where only I see it) is this: You don\'t recover from a TBI. You learn to live with it.
Thank you for putting this so well. I find I know what I want to say to explain my situation since brain injury but just as quickly forget and miss the opportunity to deal with situations where I am judged harshly. That is brilliant!
I was in a drowning accident 17 years ago. The effect on me has been profound and at times very hard to describe. People don't understand why I'm so tired and that I get really exhausted when they want to talk and talk. I am getting better, but it's very slow and extremely frustrating. I sent this to my Mum in the hope that she might get some insight.
This is absolutely magnificent. It is EXACTLY what the world needs to read & UNDERSTAND. I started a blog only last week to try & help others 'get-it'. I will absolutely be putting this up on my blog & will keep re-posting to push the message. Thank you http://abumptothehead.wordpress.com https://www.facebook.com/pages/Abumptothehead/207941139296925?sk=wall
The thing about TBI that bothers me most is that people who don't have it or don't know it mostly hurt the rehabilitation of it. Since mine occurred at 16 during the formation years of my life all the bad advice, bad instruction, bad support, bad participation and bad care doubled the time it took to get better. I'm lucky that i learned a few things about money on the way so that i could finally separate myself and isolate myself to allow my own body to correct itself.
This was putting letters to words, to sentences, formulating a simple explanation for the varied experiences we all have as TBI survivors. Brilliantly! Thank you very much and printing as well to share. Heart to Heart, Hand to Hand, Eye to Eye. Peace & Understanding be with ALL.
I have discovered and posted this to my daughter's FACEBOOK page who has TBI due to a near-fatal auto accident 12-29-10. I am her Legal Guardian and each day is a challenge and inspiration! My daughter was Head Triage Nurse for years before this accident and she observes that it is hard when you "know too much".
Very interesting to read so many of the statements I can relate with. It is a challenge everyday but with time things get better!!
I find it difficult to chat with people, I dont know. It is especially more difficult as I look normal, except I have alot of scars as a result of the RTA in which I got the ABI. It is difficult for me to try to overcome this obstacle, as I have no real support systems now!
tears rolling down my eyes as im reading this. It's like God answered my prayers. my family do not understand at all they do not even accept my TBI. I have had several explosive tempers with them when I try to explain to them and did not know how to put it in words. Thank you so very much for understanding.
In 1981, I was in a car crash, for thirty years i have lived with Frontal Lobe Damage. Until the internet came around I felt i lived in my own nightmare. So much more info on brain damage, especially Frontal lobe in the news these days. War, football, ... head injuries have brought the light to the world on what i struggled thru alone for too long. Excessive sleeping pills for years, none would shut my brain down, now hear that thoses sleeping pills prevent the brain from attempting to heal itself. I have taken Elival for sleep, depression, pain and ritalin for the daytime to keep me somewhat focused. so much to say on this subject.... been writing poetry for years and was a main therpy for me over the years.
My brain was under autoimmune attack for 10 years before my doctors correctly diagnosed it, so it's not traumatic, just traumatic to me. This article is very helpful in validating what i am going through. Going to print it out and put it on my family's fridge, as they don't "get it".
Wow! This is very similar to a section on my own web site. I am recovering from TBI sustained 11 1/2 years ago and am actually only now just starting to be able to navigate my way around the web sites for those of us with TBI's. Because I find lots of information on one screen very overwhelming I have set up a site that I hope may be easier for people like me to understand. For more on this subject please come and visit 'me' - I would love to receive your support! http://www.mylatentself.co.uk/you-think-i-know/
Finally, a site that helps my family understand why I do the things I do. About 6 years ago I survived an AVM that ruptured. It is an every day struggle and changed the person I was. Has changed my children\'s lives forever too. Tears just about everyday.
My nephew was in an automobile in 1979 and was in a semi-coma for 55 days with a TBI. At that time I was his guardian and sought help from the only organization around our area at that time that told me he could function in normal classes. He even got an early childhood education degree, but he was never able to hold a job at any school for more than one year. After the last one, the lead teacher informed me that not only, under the umbrella of cognitive behavior, did he have a short-term memory problem but he had trouble with reasoning and thinking. That made everything click into place. He also cannot manage money which I have found to be true of other TBI'ers. Later he found a TBI support group of which he is a member. The support he receives from that was, I think, a lifesaver for him.
My husband is 3 years post TBI (he was shot in the head). I read him this article & he disagreed with many of the statements. He wants people to know that HE often thinks he has more stamina than he does, can do more things than he can & understands more than he does. He wishes people would humor him a bit & not say "I told you so" when he thinks he can do more than he really can do.
Thank you so much for this article. I have a son currently in high school with a brain injury. He is able to participate in college prep classes with accommodations. I have forwarded a copy of this article to all of his teachers. They are grateful to have a way to understand him and his efforts.
after surviving a suside vest IED while serving in afghanistan.this was very helpful for me to try and understand what i am going thru and putting my family thru. my hope is to help my wife and family understand.
Reading this made me cry.. you found the words I've been searching for so long. Thank you~
as a mild TBI patient, i've felt all these things along with great frustration when others didn't understand. i think i'm going to post this as my status on facebook once a day. thanks! i think i'm going to start going to support groups, so i can be around people who truly do understand.
Surviving a brain injury has been a slow process. The list provided here gives me thanks to those who have researched this issue. I have live alone, so when I presented my MRI to my father..no response. I have lost communication with others but not with the TBI team here in Colorado Springs, very good organizations out there for those who need it!
Thank you soo much as a mother of a 20yr old with a TBI I have struggled to find something so simple yet explains so much. I am certainly going to print this off and pass it round my friends to help them understand. Thanks.
yes i wish that when i got my tbi 12-25-1972 while serving in in the us navy i was in a severe hellicopter crash instead of getting help i gotPUNNISHED abused medical neglect right here in the good USA as of today still no help been told iam costing the VA a lot of money
YES I WANT TO THANK YOU FOR MAKING IT EASYER TO UNDER STAND MORE HOW MY WIFE FEELS AND THE WAY SHE SEE\'S THINGS. I KNOW THAT READING THIS SURE MAKES ME SEE THINGS A LOT BETTER. I\'M GOING TO PRINT A FEW COPYS FOR A FEW FAMILY MEMBERS SO THEY WILL UNDER STAND JUST WHATS GOING ON WHEN THOSE TIMES ACURE.
tears...this is what i have wanted to scream at my family for three years, i am glad i can share it in a more constructive way. I was discharged with no follow-up, and absolutely no provider anywhere along hospital recovery even mentioned tbi to me or my family. i thought i was alone. i understand now. thx maybe my loved ones will too.
well done, team amazing! thanks for the work and thought your group put into this. i'm sure it will be a help for many of us!
thank you for posting this; patience is more than a small virtue when dealing with an injured brain.
I suggest adding that talking on the phone is quite difficult. Talking face to face allows me to use gestures and facial expression to make up for many of the words that I cannot instantly recall and allows me to avoid interruptions These interruptions often cause me to lose track of what I am trying to say and my effort to communicate simply fails.
Thank you so much for this insight into my daughters brain, I know this is going to help my family and friends understand just a little more about the injury my daughter has to deal with for a lot of years to come......Kath
Excellent piece! Thank you for putting all of these ideas into one article... we've heard each of them so many times. (signed) Wendy, Encephalitis Global, Inc.
THIS WEBSITE IS AWESOME!!!! I AM A TRAUMATIC BRAIN INJURY SURVIOR OF 18 YERES. THIS SITE IS SO RITE ON OF SOM MANY THIGS I AM , HAVE, & CONTINUE TO STUGGEL WITH. I FEEL THAT THIS WAS A BLESSINGS TO FIND. SOMEONE THAT GETS IT ALL. I AM NOT ABEL TO REED BOOKS BECUZ COMPRENSION, BUT I AM ORDERING SO FRENDS WILL GET ME MORE. THANK YUO SO MUCH FOR THIS SITE.....
Thank you, Thank you! Everyone expects my 20 year old to get on with her life. I am printing this up to show the next person who pushes her beyond what she is capable of at this point of her rehabilation.
wow, amazing! my 20 yr old has a brain injury, thank you for posting this, i will post on his site. thank you and blessings.
I am printing this to give to my 12 year old sons school/teacher. What wonderful advise for all of us dealing with a loved one following a brain injury!
These are amazing things you have said. Every one applies to my daughter who has TBI. I agree they should be in a packet somewhere!
ive wanted to say all this for so long!!!!!!!!
OMG, this is awesome. I wish this could be part of any discharge packet for families of TBI survivors!!! Way to go. Steff- Severe TBI survivor 24 yrs and Board Member for Brain Injury Association Michigan.

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