What Brain Injury Survivors Want You to Know by Barbara Webster

 

Barbara Webster

Barbara Webster

Lost and Found author, Barbara Webster Wants You to Know

 

I need a lot more rest than I used to. Lost and Found

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

- but that is because I have trouble following all the different “lines” of discussion and 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, allowing 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 as well, trying not to interrupt, allowing me to find my words and follow my thoughts.

It will help me rebuild my language skills.

 

Please have patience with my memory

and 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 help of the

‘Amazing’ Brain Injury Survivor Support Group of Framingham, MA

 This blog is an excerpt from Barbara Webster’s popular book Lost and Found which is filled with practical strategies for living live every day.

6 Responses to “What Brain Injury Survivors Want You to Know by Barbara Webster”

  1. Craig says:

    Thank you. This really helped me understand what I am experiencing and doing. I am still working on building the new me, as a return to the old me – it just isn’t happening, unfortunately.

  2. Andy says:

    Thank you,
    I fully agree ABI since 1993, on the outside I look perfect, inside some days are better than others, in fact for the first five years I acted invincible.
    I have met with families of others who have acquired brain injury through either illness or as in my case accident, I have to be careful when I hear the person is as good if not better than before the incident.
    I believe based on my own experience that our internal survival mode kicks in, unfortunately that does always not last very long, problem is each person is different so there is no accurate time scale, so all I can do is suggest to the family members to watch for the downturn.
    That can appear in so many different ways, frustration when what was easy is suddenly difficult, simple things like remembering a song, forgetting where you were going when driving (yes I still drive), forgetting that next step when doing a job that was second nature, and many others.
    I have come to believe that our brain is like a bank of filing cabinets, the information is in there our new task is to give ourselves the time to look through the files because we don’t always automatically open the right drawer, but giving ourselves time we will get there.

    Keep the faith, there is a productive life after brain injury, I found we must give ourselves and our families the time to adjust to the “New You”.

    Andy.

  3. Jackie Blackman says:

    I found it difficult to find articles on cognitive fatigue, people don’t understand even those who had a stroke, because I look normal, when I say it’s not a physical tiredness they look into the distance, it’s so debilitating, but on this lovely sunny morning it’s nice to see what I’m experiencing is valid.

  4. David bruce says:

    Some very wise words.after seven years, I am still at times made to feel that I am the problem, not my injury. Do NOT give up on yourself and feel free to smile and walk away from any situation that makes you feel out of place. It is your mind that is healing, not your legs so you CAN walk away.

  5. gregory hughes says:

    Thank you

  6. Susan Leayr says:

    Thank you, thank you thank you. This is what I have been trying to say to others for four and a half years
    Susan

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