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

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! :(

These explain me pretty much to a T. And my tbi was at birth, so I can only imagine how confusing and frustrating these changes are when a tbi occurs later in life.

Please do a google search for rick simpson n phoenix tears. There are some ebooks that are helpful concerning tumours amoung other things n how to improve ones' condition. You can donate or access them for free. The point is to help people n empower them in their health. Be well~

Thankful for this article. I couldn't read all the comments to see if anyone with chiari malformation could relate to this (I might read them all on my next sleepless night), but I can. Chiari malformation is a condition where part of your brain (cerebellum) hangs out of your skull and possibly into your spinal canal. My chiari malformation has caused a syrinx (cyst in spine pressing on my nerves), scoliosis and problems with my neck.

Chiari malformation doesn't just suck because of all the different symptoms, but also because you appear to be healthy so people don't understand that you're truly suffering and impaired. One moment I'm fine and the next I'm not. Some days my symptoms are more physical, such as horrible head and neck pain, right sided weakness, my right leg drags, pain and tingling throughout my body, lack of coordination,  or drop attacks. Other days my symptoms are not something you can see when you look at me: confusion, difficulty with memory, speech problems, dizziness, trouble focusing, irritability due to over stimulation and depression. 

I don't think I would ever want anybody to be able to look at me and see my invisible illness, but looking well on the outside when you're not on the inside can be extremely frustrating at times. People may suggest you just need to take certain vitamins, exercise or you're faith is just not strong enough for healing. You know friends are disappointed when you back out of something because of your illness. You wonder if people think you're lazy, attention seeking or weak. It's bad enough when you wish it would all go away but it won't; it's even worse when you finally accept the way you are and others don't. You want people to understand what you barely understand yourself.

Thanks for this article.

Hello,

A good friend of mine received a traumatic brain injury a few months ago. I came across this article looking for different ways I could support her on the long road she now faces. She has just recently moved from intensive care into a rehabilitation setting. The rehab home she is in seems really good and there is a lot of support for her with physical things - swallowing, starting on soft pureed food, using the toilet instead of adult diapers, standing, walking, talking, washing her own face etc as she slowly becomes able to attempt these tasks. They think that in time she may be able to speak again, possibly be able to walk short distances, eat soft food and they are currently discussing whether she will need ongoing care or whether she will be able to go home eventually. She has made excellent progress so far, and the rehab home have been good at trying to show us how to support her with physical tasks, like using the artificial tears to ease her dry eyes, and artificial saliva, things like that. But they have not given us as friends so much information about the actual cognitive side of things, so this article has really helped me to understand better. 

Thank you.

It is striking how similar many of the "thinking" effects are with other conditions. This article has helped improve my understanding and I know now to not overload her with too much chatter or changing the subject too fast etc. It is hard at present as she is very limited in how she is able to communicate with us. She appears to understand what I am saying to her, for example if I tell her about something that has happened and she doesn't agree, or is annoyed etc she swipes her arm to the side. When she approves of something I say, she lifts her arm up and down in a quick movement. Sometimes when I was talking she would thrust her hand forwards as if to say "STOP"! I had assumed this meant stop talking and so would shut up, which makes her do the sideways arm movement. I had felt confused, now I realise maybe I was talking too fast or she needed time to process.

I wish everyone who is living with a brain injury all the best for your future.

Emma x

I have a rare malignant brain tumour that surgery, chemo, or radiation, will not shrink. ...but can cause more damage. I read this article and found that I related to each and every one of the symptoms and more. Even though my problem has not been "fixed"I still have those around me that either forget because I look nearly normal on the outside, and imprisoned on the inside.  In my case, it's impossible to get others to accept and understand without  accepting their own fear and sense of loss...no matter how embarrassing or angry they say the symptoms are. As the tumour grows, so do my symptoms. There is nothing I can do about that...and yet so often they think it is in my power. If that were so...would not the pain? Would not my ultimate death?

Juanita van Tol Martel

Thank you this is so me

Thank you!! This is the most helpful read and information i have received in more than 9 months in dealing with a beloved person who suffers from brain injury. Thank you

Wow, thank you!!! You just discribed my husband's issues and I had no idea, how much he is frustrated! 😔

I spontaneously started to cry when reading this. I wish I had read this article 12, at least 10 years ago.

I never knew during all those years how to tell people around me what's going on with me after TBI. How to even correctly describe the symptoms to the Doctors. Myself being a language professional, I simply failed to make them understand. I was never able to express the problems of my brain with words.

I usually said :  "If only I were able to describe, then I would not have these cognition problems. I cannot explain the just because of the impairment."

Most people did not understand me in our fast-paced world. And in fact, our modern world with its modern technologies is advancing faster than I can follow. And after 12 years of living with brain impairments, I am pretty much alone, behind, whilst former "friends" moved on.

Nevertheless,  I have never been enjoying Life more than in the 12 years following TBI. At least I know now how to cherish ever day and to enjoy every moment. Slowly. At my own pace.

If only the CAPTCHA of this website would be better adapted to the needs of TBI survivors. It is a technical challenge for me to post this.

Audrey

I've had two emergency brain surgeries after being assaulted by 5 grown men with baseball bats when I was 12 now half my skull is metal but the hardest part of recovery was mental and the frustration with some of the aftermath like my horrible memory

Thank you this explains what is going on at the moment for me approx 8 weeks after 2/3 brain falls & knocks. If do too much am wiped out. V. hard to tell what level of activity is ok or not. 2:steps forward 1 step back.

I suffer from OCD and let me be the first to say here after reading all your comments that a lot of these issues listed actually i can relate to.

God Bless you all for the hardships you all endure. May you seek justice in having mental freedom one day

I fell on January 2nd of this year and hit my head very hard on the concrete. For a while I thought everything was fine but I'm finding out, it's not. I'm just now back to work full time and am finally getting some treatment. That list is pretty much me. I'm trying but it's not easy. Starting to come to grips with "the new me". Just wish everyone else could.

There is always hope. I have progressed further than even I expected. Someone asked why I wouldn't want my old self back. I am so much more full of life now than ever. I do have limitations. The greatest thing I discovered on this journey, is how to live in the present. The past is sketchy at best and the future requires too much thought. The other great thing I discovered is that this brain injury is a loss of self and that it affects the whole family. As soon as I was cognizant of this idea and I began to legitimately mourn the loss of myself as I knew me. I had my identity crisis and I began to find the best ME, I could ever be. I am so thankful someone put into words so many feelings I couldn't. I can print this out and share it with people who might not "get" me. My injury is 13 years old. I have chosen to nurture it lovingly as a child whom one wants to grow up healthy and strong, rather than treat it with hate and disdisrespect which would raise an unruly child. Thankful are another gift.

I am not sure if what I went through is concidered TBI or not but all of this sure fits what is going on with me. I have had colloid cyst removal of the third ventricle, twice in the past twenty years. First my long term memory was messed up and now my short term memory does not function well. I get stuff occassionaly that sticks but most of it feels like it falls through the wholes. I look fine physically but mentally and cognitively I am not. So my question, I guess would be, would those two Neuro surgeries be concidered TBI? Thanks in advance for your replies.

Hello; I have tried to post a couple of other things here, but have been unable to see them posted, so I don't know if I have done it correctly, so here is another attempt.

I suffered by brain injury during the first of a dozen or so surgeries to remove a nearly 15 year misdiagnosed/undiagnosed benign cystic tumor in the middle of my brain.  Apparently, I suffered a hemorrhagic stroke when a surgeon retracted too roughly and damaged a major artery in my brain causing a "micro hemorrhage" as my family was told.  Sounds like a contradiction in terms to me.  This left me nearly paralyzed on my left side and with no memory for at least a year and a half, as well as other cognitive deficits.  As a result, I lost my job, my ability to skate and compete (on an adult synchronized skating team), and my independence, among other devastating losses.  After A LOT of hard work, I was able to reclaim about 90% of whom I once was.  From what I have read on this site, I am not alone in my losses and in a strange way, it is nice(?) to see that others can commiserate and empathize and not just sympathize. It is great to be able to have a "safe" place to talk about my experiences without having someone tell me that I should get over it and just not think about it anymore.  I'm not a glutton for punishment and certainly would if I could and perhaps being able to vent about this could be cathartic and I will be able to forget someday.
 

This all sounds like chronic fatigue and being annoyed. Also can be confused with menopause., irritable aging depression etc. brain injury sounds a lot to me like nerve damage all over

~In October of 1999, I suffered a brain injury during the first of around a dozen brain surgeries to remove an approximately 15 year misdiagnosed/undiagnosed benign brain tumor, which caused me to experience vision loss as well as other visual phenomena in addition to the severe headaches every day.  During the first surgery, I'm told, I suffered a hemorrhagic stroke that left me nearly paralyzed on my left side and with no memory for at least a year and a half, as well as other "cognitive deficits".  The tumor had already affected my metabolism before the surgeries as I was a figure skater on an adult synchronized skating team, practicing up to six hours per week with the team as well as on my own depending on how close to a competition we were, and still could not lose any weight.  During this time, I self-medicated with combinations of analgesics to "manage" the severe pain.  It never really went away.  In addition, I was losing my vision in a hurry, going through glasses prescription after glasses prescription until the surgeries.  Despite my numerous complaints to many different medical professionals, NO ONE followed established protocol and sent me to the hospital to get a CAT Scan or an MRI or even refer me to a specialist until it was almost too late.  By the time I was finally diagnosed, I needed emergency brain surgery, but because I had gotten so efficient at managing the pain on my own, I didn't take the neurologist seriously when he said that I needed to meet with a neurosurgeon immediately and instead insisted on attending training in upstate NY for the next higher position at work and drove there myself.  I'm told that I sent everyone into panic mode. 

As a long term consequence of my injury, I lost my job, not that I could remember where I worked or what I did for work at that point anyway.  I could not remember having been to college and what my degree was in or even if I did indeed graduate.  I also could not remember having finally achieved my childhood dream of skating and competing in a national competition at the age of 32.  I didn't remember getting married and to whom and did not remember who my family and friends were and their names.  I didn't even know my name, age and my birthdate.

Now, almost fifteen years later, I'm told that you would never know by looking at and speaking with me, unless I told you, that I had any of this going on in the past.  I worked very hard to achieve this so that I could go back to work eventually.  Fortunately, I have been able to get and keep a part-time job that won't stress me out and cause my memory to tank.  It is still like walking a tightrope as far as that is concerned.

This is a wonderful article. My TBI was 20 years ago after I was rear ended by a semi. Thankfully I was pregnant, so they had to keep me in the hospital instead of sending me to a nursing home. My coma lasted for 3 months. My son was born healthy and is now 20. After I woke up, I compared my brain to a jigsaw puzzle that got mixed up. As I would get a memory back, the piece of the puzzle would be put in place. Not every memory is back, some will never be back, but I am alive, have 2 wonderful sons, and am getting re-married next month.

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