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

Here’s some great advice for friends and family members from a traumatic brain injury survivor and support group leader:

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

Barbara J. Webster, Lash & Associates

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.

Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

10 thoughts on “Lost & Found: What Brain Injury Survivors Want You to Know”

  1. Absolutely outstandingly wonderful! Thank you very much.
    Could I copy this and put it on the Traumatic Brain Injury Awareness Facebook page?

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  2. This was great! I copied and posted with of course reference to your blog and the original. I’m hoping others will see this as useful information and print it off to educate their family and friends. Thanks so much. I’m playing catch-up reading once again! The story of my life!:)

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  3. What a wonderful, pro active e-mail. Lots of information that can help people who have no idea what might be helpful. Thank you.

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  4. Thank you so much for this!! I cried as I read down the list because it is so true. I had a closed TBI 4 years ago…it was classified as a mild TBI, but I struggle everyday because it. Because you cannot see the struggle, many people think everything is better and I end up having people think I am lazy, angry, or rude because I am ignoring them. I don’t know how to tell people to slow down, give me time to process, or just let me work alone because I can do it better without coming across as…well…stupid. This put is so eloquently but clearly. I cannot thank you enough.

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  5. Thank you for writing Shelly – I’m sorry you have had a difficult experience. It is very difficult to communicate with people at times – I have had to try a lot of different approaches, till I’ve figured out how to get people to slow down, without actually telling them to “slow down”. What works for me, is repeating back to them what I think they just told me, and doing it with an attitude of confidence. A lot of it has to do with how you carry yourself. Act strong and confident and others will respond to you differently, I’m sure.

    A lot of it is really trial and error — and then trying again. So don’t give up. Just keep steady and take good care of yourself, and you can find your way.

    Be well.

    BB

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  6. Thanks for this. I am still at the point of living in the past. I know it was safe. I’m afraid to take the next step. I still feel HOPE is a 4 letter word.

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  7. It’s true – HOPE is a 4-letter word. So is LOVE, and so is FOOD. The past often seems quite safe to us, and maybe it was safer than things are right now. After TBI, you can’t take anything for granted, so it’s a lot more work just to get through the day. But after a while, you can get used to a different way of living that keeps you out of (some) trouble. We have to pay attention to more things — and ironically, the thing that is injured quite often with TBI is just that: our attention. But the past is the past. And when I think about my own past, I realize that it was not all fun and games, and even though I may tell myself I was so much more functional than I am now, there were still a lot of problems that made me not only crazy, but very unhappy as well. And now that I can’t go at top speed all the time, I can’t make myself crazy at top speed anymore, which means that there’s less concentration of CRAP (also a 4-letter word) in my life. There’s still crap. But it’s not fast and furious. And now that I know about TBI and how it affects me, I’m in a much better space to manage it, than I ever was before I knew how TBI was screwing with me.

    Well, anyway, I think I’m out of things to say on that topic right now. I’m still a bit foggy, and I have to get on with my day anyway. I hope you can feel better — eat some healthy food, have some exercise, and get some good rest. That often helps for me. A lot of times when I feel bad, it’s because I’m not feeling well physically — and that colors everything in my life. Okay, NOW I am out of things to say. Have a better day.

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