They had no way of knowing Jake was conscious. In medical terms, he was “locked in”: his senses were intact, but he had no way of communicating.
“I could do nothing except listen and I could only see the direct area in front of me, based on how the staff would position me in bed,” Jake later wrote. The disease had attacked the cables carrying information through his brain and into his muscles, but had spared the areas that enable conscious processing, so he was fully alert to the horror of his situation. He struggled to make sense of this new reality, unable to communicate, and terrified at the prospect of this isolation being permanent.
Throughout, Jake maintained a clear sense of himself. He felt every jolt, twinge and spasm of pain. “I couldn’t tell anyone if my mouth was dry, if I was hungry, or if I had an itch that needed to be scratched,” he wrote later.
He was in constant pain, and was afraid of dying – but, worse than that, he feared being trapped in his body for ever.
For months, there was nothing for Jake to do but listen to himself think. His condition mirrored that of French journalist Jean-Dominique Bauby, who published a memoir in 1997 about his experience of locked-in syndrome, written by a transcriber interpreting blinks of Bauby’s left eyelid. The title, The Diving Bell and the Butterfly, conjures the image of his body as a sinking tomb with an oxygen hookup, his mind a fluttering creature trapped inside. In 2007, the book was made into an award-winning film.