Sunday, July 22, 2012

what brain injury survivors want you to know.

This article was brought to my attention by another brain tumor survivor; I could have written most of it myself-particularly:

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 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.

One of the members of my medical team has told me that brain tumor patients have TWO brain injuries: the damage the tumor has done and then the surgery itself.

turning point.

You have all been through the trenches with me over the past few years-so I thought you deserve to hear something good: I've had a very good week! I'm sure it helps that I got to see wonderful people almost every day this week! Also-my car is back on the road and I drove for the first time in almost 2 years. I have had more than 2 good days in a row and am feeling very hopeful for the first time in a LONG time. :)
It's been an extremely difficult road-but I hope that this is the the turning point.
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