On the way to meet Marini McNeilly, who has made medical history by composing music through the power of thought alone, one question preoccupied me: how would I greet her?
The 57-year-old former language teacher is paralysed after a massive stroke two years ago, so I could not shake her hand. She is unable to speak so I could not expect any verbal response. What would it mean to interview someone with locked-in syndrome – where the brain is functioning and the person is conscious, but unable to communicate?
In the end, talking to her was simple – and humbling. A few hours with someone like Marini shows you the true value of language, music and laughter. When words are hard to find, economy – of thought and expression – are key.
Her contribution to medical progress has come through a prototype computer system which enabled her to conduct an orchestra by moving her eyes.
Four months after her stroke in December 2008, she was admitted to London's Royal Hospital for Neurodisability (RHN) and helped researchers in experiments with musical composition. She was the first patient with locked-in syndrome to trial a brain-computer music system, designed to allow patients to open up another avenue of communication with the world.
At her care home in Sussex, I asked if she would tell me a joke. Jokes are a crucial element in the rehabilitation of people who have suffered a catastrophic loss of communication – providing a linguistic exercise and also lightening the tone. Alan, her husband since 1972, who visits her every day, grabbed the perspex colour-coded letter board she uses to communicate, and by following her eye movements wrote her response: "How does a dog go when you set fire to it? Woof."
He said: "In the early days she didn't laugh or cry – she was either in pain or there was nothing... Now sometimes she lifts the whole dining room here with her shrieks – but she laughs at the most inappropriate things."
From the earliest days Marini had music therapy – exploring sound to convey feelings and evoke memories. She loved the sound of wind chimes but wanted more. It came in the form of the computer system developed by scientists at Essex and Plymouth universities. Marini was already using a system called Eyegaze, where an infra-red camera set in the computer screen follows her eye movements, allowing her to operate an onscreen keyboard spelling out messages which are then spoken by a disembodied voice.
For the music making, she wore a cap lined with electrodes sensitive enough to detect patterns in her brain waves, which altered according to what she saw on screen. By focusing on different icons she could select strings or bass and by varying the intensity of her gaze she could cause the music to swell or diminish. Within two hours she was the "paralysed woman able to conduct an orchestra", as one headline put it.
The computer programme was tricky to operate by eye movement alone but Marini, the first locked-in patient to try it, triumphed. Wendy Magee, music therapist and researcher at RHN, said: "We had all struggled with it, but because Marini had experience with Eyegaze she was far more adept. She very quickly got used to it."
The system is still under development, but Dr Magee has no doubt about its potential. I asked Marini what she had got from the experience. "Freedom and control," she said.
Did she ever feel life was not worth living? She spelt out her reply: "You don't want to d-i-s-appoint people. They give you h-o-p-e."
Did she ever feel, as is sometimes said of people with locked-in syndrome, that she was buried alive?
"Communication is key," she replied, before adding: "We have a saying in Spain: God squeezes but he doesn't choke."Reuse content