WriteWingBlog has links to several testimonies from people who have first-hand experience with acute rehabilitiation or with a misdiagnosis of PVS. Hyscience's Richard has a moving story to tell, and you can understand why Terri's situation matters so much to him. And Rus Cooper-Dowda's story is amazing -- like something out of Kafka -- you must read it:
In February of 1985, I woke up in a hospital bed in Boston, MA. I couldn't see very well and I couldn't move much -- but boy could I ever hear!I heard a terrifying discussion then that I will never, ever forget.
Around the end of my bed were a "school" of doctors in their white coats, planning when to disconnect my ventilator and feeding tube. I immediately started screaming, "I'm here!!" No one but me heard me.
They did notice my sudden agitation. They heavily sedated me. For a time, everytime I woke up I would make as much noise and move as a much as I could to show them I was "in there."
And they would, in response, heavily sedate me...
I then started spelling the same word in the air, "Don't! Don't! Don't!...."
The doctors decided that the letters I was spelling in the air were repetitive seizure activity and just happened to occur most often when they were in my room discussing killing me...I even took to writing them backwards to make it easy for them to read...
It took subversive nurses to keep her from being killed. One nurse brought in a clipboard and a broken pen so she could finger-paint letters on paper.
Yet, it earned me a final conference where the doctors had to prove to the nursing staff for political reasons that all my communication was just agitation and seizures.At that meeting, my then husband, who was a doctor siding with the other doctors who wanted to let me die, held that clipboard which was my lifeline up in the air in front of me. He was not going to make it easy.
The purpose was to prove that the nurses were basically hallucinating and that I was really and truly brain-dead.
To prove I could not communicate, he then put ink on my fingers and asked while laughing, "There isn't anything you want to tell us, is there?"
In response I spelled out, "D-I-V-O-R-C-E Y-O-U!" The laughter got very nervous then. The doctors called for medication because I was obviously having a sezure.
Then the nurse who used the board first with me said, "Let me try" and "What do you need to tell us today?"
I spelled out, "D-I-V-O-R-C-E H-I-M!!!!"
There was never a question after that about whether I was "in there' or not.
