Jeremy Laurance: 'She cannot move or speak – yet she is funny, thoughtful, positive'
Tuesday 05 April 2011
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.
Life & Style blogs
iPhone 7 (or iPhone 6S) leaked pictures show similarities to older model — but Apple is fixing the biggest issue of all
People all over the world are getting semicolon tattoos to draw attention to mental health
'Help me I'm trapped in a factory' messages keep being found on bottles of vitamin water
Google has set its terrifying, dreaming image robots on the public
What do the emojis on Snapchat mean?
- 1 Nathan Collier: Montana man inspired by same-sex marriage ruling requests right to wed two wives
- 2 James Blunt was special guest on the highest-rating Top Gear episode ever
- 3 People all over the world are getting semicolon tattoos to draw attention to mental health
- 4 Van driver who comforted Clark Carlisle and called 999 after suicide attempt dies age 24
- 5 Baby rescued 1km out to sea after parents forgot about her
£17000 - £21000 per annum: Recruitment Genius: This is a fantastic opportunity...
£17000 - £23000 per annum: Recruitment Genius: This is a fantastic opportunity...
£17000 - £23000 per annum: Recruitment Genius: If you are fluent in Japanese a...
£16000 - £25000 per annum: Recruitment Genius: This is a fantastic opportunity...