Martin Pistorius – an inspiring story about faith, hope and love through ‘locked in syndrome’

The Sunday Times today tells the story of Martin Pistorius, a South African man who ended up paralysed and comatose following a throat infection at the age of 12. His awareness began to improve four years later and by the age of 19 had fully returned.

However it was a further five years before a therapist noticed that he was trying to communicate. The penny eventually dropped that he had been aware of everything going on around him for almost ten years whilst everybody had assumed he was unconscious.

Now, ten years later aged 36, he is married and runs a computer business despite being still in a wheel chair with limited limb movement and using computerised speech.

I see that the Daily Mail actually ran the story over a week ago (I missed it at the time) and there is a powerful review by Dominic Lawson of his autobiography, ‘Ghost Boy’ in the Sunday Times today.

I’d highly recommend reading all these accounts if you can access them (you need a subscription for the Sunday Times).

One of the most striking aspects of the story to me was the extreme range of attitudes in the people who cared for him. Lawson writes:

‘He learns that… nurses can be monsters as well as saints. In the latter category there is Virna, who with aromatic oils tirelessly massages away the muscular knots in his inert frame and talks to him lovingly all the while. At the other end of the moral spectrum, a carer addresses him as “piece of shit”, feeds him so brutally he vomits, and then shovels the sick back down his throat. A nurse at the same clinic gives him a bath-time enema so forcefully he bleeds, and then dips a toothbrush into the cloudy water before wiping his teeth with it. Yet another would make sure that she could be alone with him, and then uses his body as a tool for her solitary pleasure, before “wiping herself off on me”.’

‘Locked-in syndrome’ is a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. It may result from traumatic brain injury, diseases of the circulatory system, diseases that destroy the myelin sheath surrounding nerve cells, or medication overdose.

Individuals with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. The disorder leaves individuals completely mute and paralyzed. Communication may be possible with blinking eye movements. While in rare cases some patients may regain certain functions, the chances for motor recovery are usually very limited.

There have been some inspiring stories of people with locked in syndrome rising above their disabilities and regaining some function – including the recent British cases of Kate Allatt, Graham Miles and Nikki Kenward.

But the account that made the condition famous was that of Jean-Dominique Bauby, the French editor of Elle magazine, who suffered a severe stroke, from which he never recovered.

Aided by a therapist he learnt to communicate by blinking his left eye, the only part of his body that wasn’t paralysed. He described his experiences in the book he ‘dictated’ letter by letter, ‘The Diving Bell and the Butterfly’, which was later made into a 2007 film of the same name. He died three days after the book was published in 1997.

If you haven’t seen the film I would thoroughly recommend it. I was particularly struck by the way Bauby, after being initially suicidal, was able to find meaning and purpose in the face of immense suffering and to value what function he had left. He said the two things that his condition could not take away for him, were his memory and his imagination.

I once had the privilege of spending half an hour with Matt Hampson (pictured), a Leicester rugby player, who ended up permanently paralysed from the neck down and on a ventilator after a scrum collapsed, but now runs a charity to support people who are, in his own words, ‘less fortunate than himself’. ‘I don’t think about what I can’t do. I think about what I can do’, he told me. ‘I can still talk and feel, and I can still smell a steak cooking on the barbecue. And when I dream at night I can still play rugby.’

After you have spent time in the company of such people, you wonder how you can justify complaining about anything ever again.

Many naturally assume that people who suffer from such devastating conditions must necessarily end up in deep despair but given the right support and encouragement, it is remarkable what the human spirit is capable of.

For Pistorius, Bauby and Hampson, loving relationships which helped to sustain them through the hard times, were crucial in their ability eventually to find hope in the midst of their suffering.

Pistorius says of his wife, Joanna, that ‘it was she who has taught me to understand the true meaning of the Bible passage we were having read at the service: “There are three things that will endure – faith, hope and love – and the greatest of these is love.” My life has encompassed all three and I know the greatest of all is indeed love, in all its forms. I’d experienced it as a boy and man, as a son, brother, grandson and friend, I’d seen it between others and I know it could sustain us through the darkest of times.’

It is perhaps somewhat ironic that Pistorius’ case is being highlighted just a day before the Court of Protection reviews the case of Ms M, a woman in her 50s suffering from ‘minimally conscious state’ which she contracted after a bout of encephalitis. M’s mother wants to remove her feeding tube in order that she can be starved and dehydrated to death.