Journey from paralysis to finding a reason for living

Health Correspondent

Monday 4 February 2013

FIRST he could not move his legs, then he found he could not speak and in the end his whole body was "frozen".

raison D'ETRE: Stuart Hepburn at home in Edinburgh with the script-display device that allows him to communicate since being paralysed by a massive stroke. Picture: Steve Cox

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Helen Puttick Health Correspondent

In the turbulent days after Stuart Hepburn, a business consultant and trainer, suffered a massive stroke he found he had lost most of what he had ever known – except his intellect and his wife Pam.

Eight years on, he can move two fingers and type to communicate, with his words displayed on a small screen, and he has written an account of what it is like to be locked inside your body on a busy hospital ward.His story has now been turned into a play, which is being staged in Glasgow next month and, it is hoped, will go on to tour medical schools and nursing colleges to give students a unique insight into what it is like to be entirely dependent on NHS care.His story has been referred to as Scotland's version of The Diving Bell and the Butterfly, an account of almost total paralysis written by French magazine editor Jean-Dominique Bauby, which was made into a film.Mr Hepburn said: "I see so many people trapped in partially functional bodies with no reason for living. My motivation for writing the book was to express that terribly sad situation as well as to educate hospital staff."His initial instinct had been to try to forget what had happened. He never thinks about the cold March afternoon when, as he sat working in the office of his Edinburgh home, his legs – quite painlessly – stopped working."I would go mad if I dwelt on that because for me it was the start of two years in hospital," he said.However, he warmed to the suggestion, made by a woman at his day centre, that he write a book because it might help others like him.The result, A Most Curious Detour, tells how he was able to drag himself to the phone after his stroke and called an ambulance. He initially hoped to be better within a week, but as he lay in a curtained bay at Edinburgh Royal Infirmary Mr Hepburn, then 52, found he could not voice the words he wanted to say to a nurse. Staff had to work through the phone book searching under Hepburn to find his next of kin and eventually reach Pam, who had recently moved to become a headteacher in Aberdeenshire.Mr Hepburn, 61, said doctors believed the brain-stem stroke he had suffered had left him with very limited mental ability and he describes being treated as an "imbecile".He said: "On one occasion two nurses came to make my bed then proceeded to discuss their birth control measures as though I was not present. I used to hear about staff grievances and surprising racism among the nurses... Everybody I met in hospital, doctors included, were primarily task focused when they came to do a task – not to communicate with me."He believes the technology of modern medical practice, which failed to detect what was going on inside his head, prevented more personal attempts to communicate with him.But in the early days, before any movement returned to his hand, he would blink as Pam recited the alphabet to make himself understood.She asked him one day to name the man-of-the-match at the most recent Scotland rugby international and when he blinked out "Sean Lamont" Pam rushed to the doctors triumphant that his brain was functioning.Then the physiotherapists found he could make micro-movements when instructed to shift different parts of his body.When he was at last able to type using an electronic communication device, the first thing he wrote was "sausages". Just as the doctors did not appreciate his mental capabilities, he did not believe his body was severely disabled: as he could not swallow, sausages were not an option.Eight years on, the spiritualism Mr Hepburn discovered in India in his 20s has helped him cope and he said he is striving not "to do, but to be".He wants to share this wisdom through his book, which has been adapted for the stage by the prize-winning scriptwriter, Alistair Rutherford. The Stroke Association in Scotland has funded the production, which includes a cast of six actors.Mr Hepburn said: "There is a real issue of what purpose I am serving. Everybody needs a raison d'etre." However, offering an insight into his life-shattering experience is in turn helping him.l A Curious Detour is being staged at the Scottish Youth Theatre on Saturday, March 2 at 7.30pm. For tickets, £10 (£8), contact: Tron Theatre Box Office, 63 Trongate, Glasgow Telephone: 0141 552 4267 On-Line: www.tron.co.uk.

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Journey from paralysis to finding a reason for living

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