Cathy Rentzenbrink spent her "last normal day as a teenager" listening to Lou Reed and helping out behind the bar at her parents' pub in Snaith, Yorkshire. That night, after last orders, she and her younger brother Matty went off to a Saturday-night disco at a snooker club about a mile from the village. Cathy left early. The next time she saw Matty he was lying on the road, knocked down by a hit-andrun driver as he was walking home in the early hours. He was 16 - and never recovered consciousness.
He did, however, survive. At least if you can call breathing on his own and occasionally opening his eyes a life. When the hospital declared there was nothing more they could do for him, and there was no bed available for such a hopeless case, Cathy's parents took Matty home to the pub, converting the garage into a specially equipped room and learning how to feed him, wash him and keep him free from bedsores. They watched television with him, took him to the pub garden, talked to him and tried to carry on as normal for eight years, until at last they applied to the courts for permission to withdraw all nutrition, allowing Matty to die.
The Last Act of Love is Rentzenbrink's account of how they came to that decision; an attempt to work through the guilt she felt at wanting her brother to die, not just for his sake but also to release her and allow her to live again. It's not an easy read.
Rentzenbrink has a powerful voice, unsparing in the details of Matty's condition - the blood on her trousers where she had knelt on the road beside him, the 4in crater in his skull, the "stale, sweaty smell hanging around him". She's also unflinchingly honest about her reactions to the accident and its impact on her family.
They refused to acknowledge the possibility that Matty might not improve. "We'd heard that the brain could be taught to forge new pathways. We wanted to keep trying." (Matty had been a star pupil at school, his parents discovering two weeks after the accident in August 1990 that he had achieved seven A* passes at GCSE.) Meanwhile, her father would talk about walking with Matty. In reality, four people would have to lift Matty to a standing position and then manipulate him backwards and forwards. He could do nothing himself, except breathe. His friends were shocked at his vacant gaze, his skin covered with spots and blackheads, his inability to move of his own accord.
After the funeral Rentzenbrink "waited to feel fixed" but instead carried on drinking and grieving. She got married, moved to the United States, began writing a novel. There was still no reprieve from dark thoughts, from being stuck in that moment when the car struck her brother. She became obsessed with the idea that it would have been better if she had been hit, not Matty. "I'd been much less fit than he was, and smoked, so perhaps wouldn't have survived… There would have been no coma, no eight years."
"Will I always be this miserable?" she asked her therapist, who replied, "Some people have to do a lot of work on themselves." Not a good advertisement for the profession, but all credit to Rentzenbrink for persisting in her attempts to deal with what she begins to think of as "emotional tinnitus", that undercurrent of deep sadness. She began to understand the problem was not the grief - who would not feel unbearably sad after witnessing those eight years? - but the corrosive effects of guilt. Guilt that she wanted Matty to die. Guilt that she wasn't there when he died (because she could not bear to watch the symptoms of his distress as nutrition was denied). Guilt that she can still laugh. Guilt that she can't get over what happened.
Only when she read a report into "prolonged disorders of consciousness" from the Royal College of Physicians, which argues that it should not be left up to the families to bring a legal case in situations such as Matty's, did she begin to feel not relieved exactly, but mitigated. "We all felt too responsible. Too much like it was us giving up. I had started to feel like a murderer."
It is estimated that 6,000 people in the UK exist in a permanent vegetative state, their families in limbo, living with a person whose brain is destroyed but who is still technically alive, victims not just of a fluke accident but of "a wider societal problem - that we don't know how to deal with the shades of grey that now exist around life and death". Rentzenbrink raises some discomfiting issues while at the same time working out for herself how best to deal with them.
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