Twenty-year old Rom Houben, an engineering student, who nearly died in a car crash in 1983 has been wrongly diagnosed as being unconscious for twenty-three years.

It transpires that he suffers from the very rare ‘locked-in syndrome’ – famously associated with Jean-Dominique Bauby – ex editor of women’s magazine, ELLE, and author of the book Le Scaphandre et Le Papillon (The Diving Bell and the Butterfly) which was made into a critically acclaimed film of the same name in 2007.

Mr Bauby was completely paralysed save for the movement of one eye.  He managed to communicate his considerable memory and imagination by blinking – indeed his entire book was dictated in this way.

Rom Houben, however, did not have even one active physical feature.  Doctors at the Université de Liège thought him to be in a vegetative state until 2006 when neurologist, Steven Laureys, used modern brain scanning technology to show that Houben was in effect mentally very much alert.

It later transpired that his sight and hearing have also been practically faultless all along.

He has been a total prisoner of his own body for 23 years, having had no means to communicate his thoughts and feelings.  Yet, he maintains he has lived through others.  His family has kept him sane with their stories of happiness and sadness, marriages and deaths.  All the while, Houben’s smiles and tears remained invisible to the world around him.  His cries never heard.

Steven Laureys believes that more than four in ten patients deemed to be in a vegetative state are in fact conscious to some minimal degree.  It remains however, “very difficult to quantify consciousness,” and to discern reflex from voluntary movement. 

Since 2006, Houben has had a rebirth – the revelation of his consciousness has brought a new enthusiasm to his treatment.  After months of trying to get him to blink or move parts of his body, he moved his toe.  He started to communicate using his toe to press a button.  Later a movement in his right forefinger became an even greater breakthrough.  This now enables him to communicate with the support of a communication facilitator.  The process involves his speech therapist taking him by the elbow and guiding his right hand over a specially adapted computer keyboard, feeling for any minute twitches when over the correct letter.  If a letter is incorrectly selected his speech therapist, Mrs Wouters says she can feel a slight recoil in his finger.  Houben has written for the care centre’s magazine and would like to write a book.

The method is controversial however, and is particularly discredited in America.  It’s easy to see how someone could manipulate Houben’s movements to fashion whatever they wanted to say.  Politically it is also true it gives more ammunition to pro-life campaigners.  Even neurologist, Mr Laureys, has himself confessed to initially being a sceptic.  He decided to put it to the test.  “I showed him objects when I was alone with him in the room and then, later, with his aide, he was able to give the right answers.”  His aide having no idea what had been shown to Houben could not have spoken for him. 

The controvosy seemingly settled, Yale neurologist, Steven Novella, argues that Laureys did not use proper controls.  Laureys is working on a scientific study on the matter.

It’s telling that the polemic is mostly stirred up by journalists who have never met Rom Houben.  Those who have do not have any doubt in the authenticity of his words.

Houben’s interpreter is Flemish, and while bi-lingual, it would be hard for her to masterfully make up the black humour in French that Houben was renowned for as a young man.