'The Diving Bell and the Butterfly' was a disturbing book. A Groundhog Day tale. The kind you feel compelled to reread, knowing the terrible outcome, knowing that you don't want to, knowing that you can't not. I consumed it and cried at its hopeless consequences, at the plight of journalist Jean-Dominique Bauby, whose memoir it is. Bauby was the editor-in-chief of French Elle. One minute the stylish life of Riley, le tout Paris his demi-monde. The next, oblivion. After a massive stroke during the Nineties left him with locked-in syndrome, he fell into a coma and eventually came round, fully aware but almost incapable of moving. A tiny twitch of the head here, a semi-blink of an eye there. Too little, too late. It's a long short story, but basically the guy blinked his entire memoir. For four hours a day, ten months in the making, a compassionate transcriber with the patience of a saint recorded his 200,000 blinks, every word he 'wrote' taking at least two minutes. The book was an instant best-seller, a worldwide phenomenon. Two days after it was published, Bauby was dead.
Unimaginable, the frustration of being trapped inside oneself, knowing too well what's going on out there. Incapable of taking part. Struggling to communicate against all odds. Like being buried alive. I picture an old Hammer Horror, the grated fingers of a living corpse clawing in vain at the nails beneath the coffin lid, fighting the death that will prove his salvation. Why couldn't Bauby's life have had a happy ending? Because locked-in syndrome rarely does.
But sometimes it does. Take Martin Pistorius. In many ways his story, as he recounts it in his memoir 'Ghost Boy', is so much worse, so much sadder, than what Jean-Dominique Bauby endured. South African-born Martin was twelve years old when his body caved in to a mystery illness. The energy drained out of him, as did the will to live. Within eighteen months he had shut down completely. Reduced to little more than a vegetable in a wheelchair, he was discarded to the care of specialist centres for acutely disabled children. By the time he was sixteen, and had begun to regain consciousness - unbeknown to anyone else - his own mother was willing him to die. She told him so to his face, unaware that he was aware of her every word. She later attempted suicide. She survived.
Martin suffered shocking abuse at the hands of people who thought he'd never tell. But he has told – in this gasp-inducing, heart-breaking, uplifting memoir that everyone must read.
Not until he was twenty-three did he meet anyone who could make a difference. One humble therapist perceived his awareness, nurtured it, and helped Martin's parents to help him recover.
It's too long to tell here. Buy it. Be glad that he got his life back, took control, fell in love with an angel called Joanna, married her, and moved to England. That he was able to teach himself web design, and that he can earn a living. Still in a wheelchair - he got married in one - but … read it.
Read it, drowning in guilt that you are having a bad day. You got a flat tyre, lost your wallet, dropped your phone, left your keys at home, didn't like what you ordered, missed your train. You've suffered a thousand trivial inconveniences this year so far, and Jesus, it's only February. Read this and sob. Hope it never happens to you.
This book is already a New York Times bestseller. Yay Martin. Will they make a film of 'Ghost Boy'? Bound to. Although I kind of hope that they don't. Hollywood defecates from dizzying heights on true stories. It'll change the ending of the Bible if it suits. It made a pig's ear of Bauby's 'Diving Bell ..', despite which it still managed to win a BAFTA for best adapted screenplay, in addition to attracting a few Oscar nods. The producers' chief crime was compassion reassignment. You don't get away with that. If the movies come looking for Martin Pistorius, please God they get his happy-ever-after point.