Last week I visited a patient with locked-in syndrome. Propped up in a specially adapted wheelchair, Marini McNeilly was funny, provocative, thoughtful, but above all positive and optimistic, despite being unable to move or speak since suffering a massive stroke two years ago.
But what does locked-in syndrome actually mean? I thought I knew since seeing the wonderful film about Dominique Bauby, author of The Diving bell and the Butterfly, the 1997 bestseller he "typed" by blinking one eye, the only movement he was left with after suffering a devastating stroke.
Bauby was severely locked in – it was weeks after his stroke before anyone realised he was conscious. Yet he proved it was possible not only to communicate but to joke, flirt, argue and write a riveting account of his experience – all through the flicker of an eyelid. Compared to this, Marini McNeilly had a range of expressive possibilities. She could hold my gaze, listen to a question and nod or shake her head. When amused, she threw back her head and emitted a shriek of laughter. When displeased, her anger is, I am told, ferocious. She can "speak" through a computer operated by her eyes moving over a keyboard and, in a pioneering experiment, has made music using the same technique.
She is thus less locked in than Dominique Bauby was. He in turn had relative freedom of expression compared to the patients thought to have been in a vegetative state – with no conscious activity – whom experiments with an MRI scanner showed last year may in fact be conscious but unable to indicate the fact by any movement at all. Locked-in syndrome is, then, not a state but a continuum. Marini McNeilly struggles to reach beyond her self, as Dominique Bauby did, as we all do. It is the human condition.