What Brain Injury Survivors Want You To Know

Today’s blog is compiled by The ‘Amazing’ Brain Injury Survivor Support Group of Framingham, Mass., one of 34 BIA-MA support groups around the Commonwealth of Massachusetts. It was then published in Lost and Found, A Survivor’s Guide for Reconstructing Life after Brain Injury, by Barbara Webster, BIA-MA’s Support Group Leader Liaison. If you want more information about joining a support group, click here. 

What do  brain injury survivors really 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 – 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 issue 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. Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

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4 thoughts on “What Brain Injury Survivors Want You To Know

  1. Debbie

    my son is in a coma and has been since Sept. 3rd… he breathes on his own ….opens his eyes a lot…hands and feet move occasionally…. but does not respond to commands…the doctors say he will come out of the coma. Tomorrow is his 26th birthday…I am hoping tomorrow is the day he will show us some new sign of waking up.

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    1. Brain Injury Association of Massachusetts Post author

      Debbie,
      Thank you for sharing. I know more than a few people who have been in a similar situation. Are you located in Massachusetts? Would you like someone to talk to? Besides listening, we can help with information and resources for survivors of brain injury, caregivers and family members too. If you ever want to talk or get advice or resources, call 800-242-0030. IF you are located in another state, we can refer you to that brain injury association if you would like. Happy 26th Birthday to your sweet son. We are also hoping tomorrow he will show you a good sign of waking up.

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    2. Kristin Olliney

      Hi Debbie! I emailed you directly.
      I am a mother to a brain injury survivor. I have an online support group for Parents of Children with Brain Injuries. It is on Facebook. Here is the link https://www.facebook.com/groups/ParentsofChildrenwithBrainInjuries/ If you are not on Facebook but could use some support, I am here for you as well. Our group is amazing. We have children of all ages babies to adult children. Some of us have survivors in the hospital like your son and others are many years out. We are a great support to each other and I invite you to join us. I am praying for your son and your family. Please reach out to me or our group. We are here to help in any way we can. Happy Birthday to your son! I hope your wish comes true.
      Kristin

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