Jeremy Laurance: 'She cannot move or speak – yet she is funny, thoughtful, positive'

Medical life

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.

PROMOTED VIDEO
Life and Style
ebooksA superb mix of recipes serving up the freshest of local produce in a delicious range of styles
Life and Style
ebooksFrom the lifespan of a slug to the distance to the Sun: answers to 500 questions from readers
Life and Style
food + drink
Arts and Entertainment
musicBand's first new record for 20 years has some tough acts to follow
News
peopleAt least it's for a worthwhile cause
Voices
A new app has been launched that enables people to have a cuddle from a stranger
voicesMaybe the new app will make it more normal to reach out to strangers
News
Liam Payne has attacked the media for reporting his tweet of support to Willie Robertson and the subsequent backlash from fans
peopleBut One Direction star insists he is not homophobic
Life and Style
healthFor Pure-O OCD sufferers this is a reality they live in
Life and Style
Sexual health charities have campaigned for the kits to be regulated
healthAmerican woman who did tells parents there is 'nothing to be afraid of'
News
Shoppers in Covent Garden, London, celebrate after they were the first to buy the iPhone 6, released yesterday
tech
Arts and Entertainment
Ben Affleck stars as prime suspect Nick Dunne in the film adaptation of Gone Girl
filmBen Affleck and Rosamund Pike excel in David Fincher's film, says Geoffrey Macnab
Life and Style
fashion
News
news
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Chemistry Teacher

    £85 - £125 per day: Randstad Education Chester: Job Opportunity for Secondary ...

    English Teacher

    £85 - £125 per day: Randstad Education Chester: Job Opportunity for Secondary ...

    English Teacher

    £100 - £110 per day: Randstad Education Group: [ Megan Smith 22/09/2014 17:00:...

    Foundation and KS1 Teacher

    £100 - £140 per day: Randstad Education Birmingham: Foundation and Key Stage 1...

    Day In a Page

    A roller-coaster tale from the 'voice of a generation'

    Not That Kind of Girl:

    A roller-coaster tale from 'voice of a generation' Lena Dunham
    London is not bedlam or a cradle of vice. In fact it, as much as anywhere, deserves independence

    London is not bedlam or a cradle of vice

    In fact it, as much as anywhere, deserves independence
    Vivienne Westwood 'didn’t want' relationship with Malcolm McLaren

    Vivienne Westwood 'didn’t want' relationship with McLaren

    Designer 'felt pressured' into going out with Sex Pistols manager
    Jourdan Dunn: Model mother

    Model mother

    Jordan Dunn became one of the best-paid models in the world
    Apple still coolest brand – despite U2 PR disaster

    Apple still the coolest brand

    Despite PR disaster of free U2 album
    Scottish referendum: The Yes vote was the love that dared speak its name, but it was not to be

    Despite the result, this is the end of the status quo

    Boyd Tonkin on the fall-out from the Scottish referendum
    Manolo Blahnik: The high priest of heels talks flats, Englishness, and why he loves Mary Beard

    Manolo Blahnik: Flats, Englishness, and Mary Beard

    The shoe designer who has been dubbed 'the patron saint of the stiletto'
    The Beatles biographer reveals exclusive original manuscripts of some of the best pop songs ever written

    Scrambled eggs and LSD

    Behind The Beatles' lyrics - thanks to Hunter Davis's original manuscript copies
    'Normcore' fashion: Blending in is the new standing out in latest catwalk non-trend

    'Normcore': Blending in is the new standing out

    Just when fashion was in grave danger of running out of trends, it only went and invented the non-trend. Rebecca Gonsalves investigates
    Dance’s new leading ladies fight back: How female vocalists are now writing their own hits

    New leading ladies of dance fight back

    How female vocalists are now writing their own hits
    Mystery of the Ground Zero wedding photo

    A shot in the dark

    Mystery of the wedding photo from Ground Zero
    His life, the universe and everything

    His life, the universe and everything

    New biography sheds light on comic genius of Douglas Adams
    Save us from small screen superheroes

    Save us from small screen superheroes

    Shows like Agents of S.H.I.E.L.D are little more than marketing tools
    Reach for the skies

    Reach for the skies

    From pools to football pitches, rooftop living is looking up
    These are the 12 best hotel spas in the UK

    12 best hotel spas in the UK

    Some hotels go all out on facilities; others stand out for the sheer quality of treatments