Lost & Found: What Brain Injury Survivors Want You... - Headway


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Lost & Found: What Brain Injury Survivors Want You to Know - Part 2


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.

Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.

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.

15 Replies

It's everything I've said over the last two years, I could do with printing and framing it as a reminder for the family, I remember cos I live with it daily!

charlies_nan in reply to Kirk5w7

Glad you found it useful, printing and framing seems an excellent idea. I also posted it on my Facebook page so hopefully some of my 'friends' could understand the change in me. That's something the hospital who caused this chaos could never understand. Ok the injury happened to my son, but that was just the pebble that got dropped into the pool, the effects ripple out to those closest and it affects them also. Hope you're having a good day. Take care

SAMBS in reply to Kirk5w7

Hey Janet - good idea. I'll copy and paste to Word doc and who knows one day may email to some old friends I don't even know if my sons would read it all if I sent it to them. Also as I make new french friends, might be worth me translating as well. Speak Sunday.

Shirley xx

Negeen in reply to SAMBS

what's wrong with your son's why are they acting like that?

SAMBS in reply to Negeen

why does anyone without a bi act as they do - I don'ti know Negeen - I feel like sayng you should ask them - but you don't know them and they are just like millions of others - don't understand what a brain injury can do to the personality of a person who may have been complicated before their BI. So there's a challenge for you for your neuropyschology - uoi tell me the answer - I'm not being sarcastic - but I can't answer your question!

Thanks Charlies'nan, I lose track of the times I say " I really mean, I need to rest/ can't talk anymore/ brains shutting down"

You have a good day too Janet xx

Even with my in comparison to most hear, minor head Injury a lot resonates, I'm chilling after a long train journey being tossed about on a train with the balance and noise has done me in.

My fitness and stamina at least physically is remarkably close to where it was, my mental stamina is still quite a way off, but still improving.

Roger, are you able to enjoy a good run? Or does that throw you off?

I rock and roll when tired and miss my footing so it seems unwise. Since I can ride the MTB's fine even when tired, not the road bike though which I can't balance on. Go figure!

Any kind of transport affects me, public is worst, cos you have no control over the jiggling about, at least my husband, when he remembers, tries to avoid the potholes and bumps.

I'm going to get a treadmill soon so I can practice fast walking and hopefully work up to jogging, the pavements are too uneven to feel safe on.

hi Charlie's nan, glad I was able to inspire you :-) a don't know which bit cos I say too much too often!

You have written it all so well, where often I just ramble.As Janet said it reflects her thoughts and I suspect probably how most of us feel like at times.

Take care of you as well - Shirley x

Awww what a sweet piece. Thank you for writing it.

Hey, I just want to set the record straight. I didn't write this myself - just shared it. The first time I read it was on a site called brainline.org It resounded so strongly because of my son's injuries, and then shortly afterwards I saw it here on the Headway forum. As I said in part one of this posting, much of what was written in this forum's early days has been engulfed by the sheer amount of postings (and as a consequence lost) to the newer members - though goodness knows how everything could be categorised!!?? Answers on a postcard to.........

Hope you all have a fun weekend and keep on keeping on making small steps that lead to giant strides. Much love x





That was great. An insightful, informative and accurate assessment of living with ABI.

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