![]() At the worst of times, closer to his death, when his pain was unbearable and his body but a shell, I carried a mantra in my head – "That's not my dad, that's not my dad" – repeating it silently in my mind to remind myself of the person he was, really was, before the strokes. My dad, the clever, funny, winsome doctor, had been my emergency call in times of panic or stupidity, my lawyer to fight my corner, my friend. My brothers, settled in London, travelled tirelessly home to the Midlands every weekend. Physically, we were exhausted emotionally, wiped out. They took a toll on us all, although what we went through was not as bad as what my dad endured. At first, we weren't sure but the more we practised with him, the more we realised it wasn't just a haphazard movement, but a way to communicate. It was my mum who figured out, later, that he could say yes or no by blinking she picked up on it by chance, asking him if he was OK and slowly realising there was a pattern. He could move his right hand, and by chance we discovered he could write precious, shaky scribbles. But he gradually shut down and was still very much taken away from us, even while he was alive.Īt the beginning, he could still talk, but his whispered words eventually faded to silence and sadness. In hospital for just over 18 months, he wasn't completely paralysed like Tony. I wasn't.įrom being the happy, healthy man in the picture on my windowsill, my father was transformed: half-paralysed, confined to a wheelchair, fed by a tube. Uneasily, I packed a rucksack, throwing in revision notes and a change of clothes. She said he was OK and put him on the line he even spoke to me and said he was fine – but his voice was thick, heavy, slurred. I did know it must be bad for my mum to be telling me just days before my finals. I didn't know what a stroke was – I had assumed that they happened to old people, and my dad, in his early sixties, wasn't old. I didn't really register what this meant. ![]() She told me my dad was in hospital – he'd had a stroke. One evening I was revising for my final exams when my mother phoned. That picture, taken seven years ago and now on my bedroom windowsill, is my last memory of my dad as he was. It was the last time I took a photograph of my parents together, his arm thrown casually around her shoulder, surrounded by papery pale pink tulips. It was to be the last time I saw my father well. We had just celebrated my birthday together – my parents visiting me while I was studying in Paris, a fortnight before the strokes struck. I had just turned 23 when my dad suffered the first of four consecutive strokes, each a destructive wave violently washing a part of him away. But having seen my dad go through something similar, I feel able to understand what Tony and his family are going through. It's not easy to imagine the frustration or the sadness unless you meet somebody with the condition. He has said, through blinking at letters on an alphabet board as Bauby did, that he is "fed up" with life. Tony recently made the headlines because of his legal campaign for the right to die. Following a serious stroke of his own, Bauby was left paralysed save for his left eye, which he used to communicate by blinking at an alphabet board. ![]() The syndrome received widespread public attention in 2007, through the French film The Diving Bell and the Butterfly, based on a book of the same name by Jean-Dominique Bauby, who had been editor of French Elle magazine. ![]() ![]() There is no cure for locked-in syndrome, a condition most commonly caused by a stroke severing the connection between the brain and the body. ![]()
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