https://goo.gl/80Ufr0
Untold thousands of patients misdiagnosed as vegetative are actually aware. Theirs is the civil rights fight of our times.
I had just finished giving a talk about severe brain injury, and told the story of Terry Wallis, a man in Arkansas who’d had a car accident in 1984. He survived but was left in a vegetative state, and his doctors and family thought he would be unconscious forever. Then in 2003 he began to speak. Tentatively at first, he said ‘Mom’ and then ‘Pepsi’. It was a stunning development almost two decades after he was injured. Terry’s words became the stuff of international headlines, baffling commentators who thought that recovery from the vegetative state was impossible.
The trouble is that, most of the time, MCS patients are unable to demonstrate their awareness. One problem is that their level of arousal fluctuates. They cannot sustain attention and can drift in and out, making it difficult to engage with the outside world. And when they do interact, they are burdened by impairments in cognition.
This makes MCS more than a problem of communication, like the locked-in syndrome so poignantly captured by Jean-Dominique Bauby in The Diving Bell and the Butterfly (1997). Bauby, unlike the MCS patient, was cognitively intact. He had a communication disorder but was still able to write his memoir, blinking to create the words in a kind of personal Morse code.