Rom Houben has been trapped in a series of worst nightmares, including trying for 23 years to alert those around him that he was not in a coma. A new report suggests he's not alone in his experience.
In 1983, Belgian engineering student and martial arts enthusiast Houben, then 20, was in a car accident that was thought to have left him in a vegetative state. Doctors relied on the widely used Glasgow Coma Scale, assessing his eyes, verbal and motor responses. What they failed to notice was that Houben was actually conscious - but completely paralysed.
"I screamed, but there was no one to hear," he says in an interview with the German magazine Der Spiegel. Three years ago, neurologist Steven Laureys used modern scanning techniques to discover that Houben's cerebral cortex was, in fact, functioning. (The doctor has only just now made Houben's story public.)
Houben, who communicates via a computer with a special keyboard activated with the slightest movement of his right hand, is now 46. He has spent more than half his life trapped in his own body, and says he only survived this excruciating existence by dreaming himself away. In the interview, this is what he typed:
I am called Rom. I am not dead. The nurses came, they patted me, they sometimes took my hand, and I heard them say "no hope". I meditated, I dreamed my life away - it was all I could do. I don't want to blame anyone - it wouldn't do any good. But I owe my life to my family. Everyone else gave up.
I studied what happened around me as if it were a tiny piece of world drama, the bizarre peculiarities of the other patients in the common room, the entry of the doctors into my room, the gossip of the nurses who were not embarrassed to speak about their boyfriends in front of "the extinct one". That made me an expert on relationships.
According to Laureys, Houben's case may be far more common than we'd like to think. The doctor, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, says that while Houben's doctors were "not good", he's not sure better ones using this same coma scale would have detected brain activity either:
In Germany alone each year some 100,000 people suffer from severe traumatic brain injury. About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health. But an estimated 3000 to 5000 people a year remain trapped in an intermediate stage - they go on living without ever coming back again.
In his paper, Laureys writes that in about 40 per cent of "vegetative state" cases he has analysed, current brain-scanning techniques reveal signs of varying levels of consciousness. A case is being made, it seems, to stop relying on the Glasgow Coma Scale and start looking more closely at brain-scanning images.