In writing on the record, “I do not want to outlive my brain. I do not want to persist in a vegetative state.”
Brain injury or cognitive problems don’t get discussed. We talk in terms of lists of deficits, level of consciousness, attention problems, and memory and language deficits, movement disorders. We have a whole lexicon of terms to describe “cognitive deficits” we try to take it apart and track and describe the differences. We like to fix and improve things, better diet, better joints better boobs, medicine fixes and improves.
With brain injuries we watch and see, we teach compensations and we coach the family to accept the changes caused whatever happened inside their loved one’s head. When you work with the families of brain-injured clients they often say to you, “they are not the same person.” That’s when you know they have started not just to understand but also to accept what has happened. Sometimes families never accept the changes in their brain injured relatives and loved ones and they keep waiting for the person they remember to come back.
That’s why we don’t like to talk about brain damage, it begs big questions, where is our soul? Which parts can you take away, replace or enhance and still have the same person? Americans can spend hours discussing makeovers and surgical improvement, they can tell you which movie stars have had work done, but could they tell you the man talking too loud in the restaurant with the scar above his eye had a brain injury? No, they would tell you he’s just a jerk.
There is something terrifying about the thought of loosing part of one’s self and still having one’s body inhabiting your life. Can the soul be changed and rearranged and at what point are we gone but still here. We would rather not think about it.
So instead of a national dialog about brain injury we have the Schiavo case: court room drama, political posturing, fear, ignorance, denial, and righteousness. Never has so much been said and so little learned.