'I'll never be free from the feeling I failed my brother ... that I didn't keep him safe'
Cathy Rentzenbrink thought she'd already grieved for her brother when, after eight years in a vegetative state, the courts granted permission to let him die, but there was more anguish to come.
Cathy Rentzenbrink has cried more tears in the last 25 years than many shed in a lifetime. In the summer of 1990, her brother Matthew, a bright, handsome 6ft 4in 16-year-old, was hit by a car on the way home from a night out, sustaining devastating head injuries.
Cathy's overriding thoughts in the relatives' room at Leeds General Infirmary, away from the bright lights of intensive care and the bleeping monitors attached to his body, were "Please don't let him die".
She now realises she was praying for the wrong thing. Around eight years later, after much soul-searching and an agonising decision, he was released from his permanent vegetative state when the family's application to withdraw all life-sustaining measures was granted by the Royal Courts of Justice.
The effect of those eight years, and Matty's eventual death, had a crippling impact on his sister and their parents, Kevin and Margaret Mintern.
Cathy, who was 13 months older than her brother, has now written The Last Act Of Love, a heartfelt and moving memoir about their relationship and happy family life before the accident, and how her world unravelled afterwards.
Meeting her, tears are never far from the surface as she explains her reasons for the book. Yet she is not morose, but an intelligent, eloquent, plain-speaking publican's daughter who has struggled to come to terms with losing her brother.
"I do really feel I have the essence of my brother back. I'd lost that, because his personality for me was buried under the eight years between the accident and his death.
"I feel like he's with me. I don't know if he's a spirit around me, or just in my head - and I don't think it matters. What matters is that the essence of him is with me in a way that I really love. I imagine him smiling at me and laughing at me and teasing me, which is actually what he does quite a lot in my head.
"It doesn't stop me from feeling sad that he's not here in person, but it makes me feel less lonely."
The family, who ran a pub in Snaith, east Yorkshire, did not realise immediately after the accident that Matty would not recover, but fairly soon, the onus switched from praying for him not to die, to learning how to look after a body that didn't move in any intentional way.
When Cathy was alone with him she'd remind him of their secrets, about trying to roll joints together, about her drinking all the vodka on the French exchange trip and passing out, how he feigned bravery to stand up for his sister when one of the pub locals insulted her, but admitted afterwards he was petrified. The night of the accident, she and Matty had gone to the same party, but Cathy got a lift home. She'd asked if he wanted to come with her, but he declined, and ended up walking home with a couple of others. "I don't think I will ever be free from the feeling that I failed him, I didn't keep him safe," Cathy says, her voice faltering.
Two-and-a-half weeks after the accident, Matty got the best GCSE results in his school. The family prayed for a miracle, but weeks turned into months, and the slight improvements in his response levels were obliterated when he had a major epileptic attack.
As more seizures followed and his condition deteriorated into a permanent vegetative state, the impact on the whole family was palpable.
The driver who hit him was convicted of driving without due care and attention and leaving the scene of the accident, and fined £180. Cathy says she bears him no malice - she's sure that he's suffered too, in the knowledge of what he did.
Nine months after the accident, the family decided to care for Matty at home. Meanwhile, Cathy became angry and resentful, drinking heavily and one morning poured a boiling hot kettle over her arm, hoping the physical hurt would detract from the emotional.
As life went on, she became adept at hiding her emotions. Three-and-a-half years later, returning from a stint in France as part of her university degree, she saw Matty in his chair, a blank figure, staring vacantly, no signs of life, and knew it was hopeless. A year after that he was moved to a nursing home.
Then, in 1993, Cathy learned of Hillsborough victim Tony Bland, who suffered the same condition after being crushed in the disaster four years before. His doctors, with the support of his parents, were building a case that he should be allowed to die, by withdrawing artificial nutrition and hydration.
After much soul-searching, in December 1997, Matty's family made a formal court application requesting the same for him. His mother said: "It is our last act of love for him."
On June 16, 1998, that application was granted. Matty was brought home, and died 13 days after the withdrawal was started.
Cathy expected to feel relieved, but she didn't, just terrible guilt and anguish. Her life went off the rails, with her three-year marriage crumbling.
"After these awful eight years, I really thought I'd done all the grieving. I thought it was going to be a release. But I felt an avalanche of grief at the loss of him.
"For several years, I was drunk all the time. I couldn't bear that time between closing your eyes and going to sleep, because I would think about Matty and it would be too distressing."
She contemplated suicide, but she says she could not have done that to her parents.
"I don't think I ever really wanted to be dead. I just wanted not to hurt."
Work has been her salvation, she says. From securing a job in Waterstones, she progressed to books editor at The Bookseller magazine and is project director of the charity Quick Reads.
Cathy (42) has had therapy spasmodically since Matty's accident - and is still following that path. "The first therapist I saw thought it was post-traumatic stress disorder, another thought I was mildly manic depressive. Now, I feel less like I have to find a diagnosis."
Now remarried, she has a five-year-old son - named Matty - but she's hesitant about whether she would want another child.
"I'm really scared about having another, because that would then create the possibility for my son to suffer as I did, if something happened."
But she's learning to cope with her loss. Mementos of Matthew - used to be hidden away in a box, but not any more.
"I have my book with his beautiful face looking out at me on my bookshelves, I have pictures on my mantelpiece."
- The Last Act Of Love by Cathy Rentzenbrink is published by Picador (£14.99)