I have even driven in the epic apocalypse rain storm we had here. This is from someone who a few months ago could not even drive with the windshield wipers going. They were mesmerizing and forget it if there was lightning. It was all too much to look at and I could not pay attention to driving. Maybe this time my brain was put back together the right way for driving. HA! I am still working on some deficits with driving but I am kicking ass for sure.
Still jobless, but it is what it is. Just glad I have a peep now that also does not have a job so I have someone to talk to and hang with. Maybe that has to do with my good mood.
And not that I always want to harp on and bring up TBI, but hey folks it is part of my life, it is part of me. It is a big part of me now. And FYI, the one year birthday of the new me is coming up on 10/7. 10/7 is the last day i remember so that is my anniversary even though the accident happened early a.m. on 10/8. Oh well, one year of new me!! But this rambling is about this. I have a tbi friend that goes to support group and she sent me this and I am sending it all to you. Some of this does pertain to me. Please read it and remember this.
What Brain Injury Survivors Want You to Know
Complied by: The ‘Amazing’ Brain Injury Survivor Support Group of Framingham , MA
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 use 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’s 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.
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 am 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 strategy for healing.
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 me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate.
You may not be able to help me do something if helping requires me to 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 me 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 employ the many, many coping mechanisms, accommodations, and strategies needed to navigate our new lives. Every single thing in our lives is extraordinary difficult for us now. It would be easy to give up without Hope.
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