In February 1999, Debbie Chandler, aged 25, moved out of her parents' north London home and into her own house in Chigwell with her boyfriend Lee. She enjoyed her work as a nursery nurse, her older sister Samantha had married and moved out some years before, and Debbie was very much looking forward to starting life in her own home.
"The week before she moved out," says her mother Pat, 57, "my husband took me out for a meal and said, 'Right, what shall we do with the rest of our lives?' A week later we found out."
On February 27, Debbie had a fit, and came to with a terrible headache. She was taken to hospital, but discharged some hours later with a suspected ear infection. Two days later, she collapsed again. After taking a CT scan, the hospital again discharged her. A few days later, she had another fit. Finally, the hospital diagnosed Debbie as suffering from a subarachnoid haemorrhage, a rare condition in which an artery close to the surface of the brain ruptures. A series of operations at the Royal London saved her life, but she lost her memory. Six years on, she can't tell you what she did earlier in the day, and is liable to forget meeting someone as soon as they step out of the room. She can't read a book, since by the time she gets to the bottom of the page she has forgotten the story.
In November, Debbie Chandler was awarded £4.1m damages against the King George Hospital in Goodmayes, Essex, because doctors had failed to diagnose the problem.
"The symptoms she had were classic for a severe brain haemorrhage," says her solicitor, Frances Swaine of Leigh Day. "Misdiagnosis is not drastically uncommon, but the difference in this case is the severity of the injury: most people would have died of a haemorrhage of that level."
The money will ensure care for the whole of Debbie's life, which affords her parents some peace of mind, since she requires 24-hour attention and, at the moment, is entirely dependent on them. Since she has lost not only her memory but her cognitive ability, she cannot be relied upon to cross a road unaided, to wash and dress herself, or go to the shop without getting lost.
"It's like having a child," says her mother. "Because apart from her lack of memory, she doesn't think for herself. Occasionally, like this weekend, out of the blue, she said 'I'm hungry, I'll make myself a sandwich.' But that is a very, very rare thing. She'll run a bath but only put the hot tap on ..."
After Debbie's condition was stabilised, she was paraplegic, her head needed to be supported, and she could barely communicate. Although she made some progress with physiotherapy, when she was discharged from hospital, her family was informed she would never get any better.
"It was a devastating blow," says her father Alan, 55. "All the NHS doctors were very, very negative. They told us that, after two years, what you see is what you get, and we should not expect any improvement."
After four years of living at home with her parents, Debbie, now 31, is friendly, funny and surprisingly articulate. I met her briefly before she went out for the evening: she was going out for a pizza with the BBC director who made a film about her last year, and became a friend of the family. Debbie makes jokes based on wordplay and teases her parents. Although she has problems with balance, she walks unaided. Clearly, she has made extraordinary progress since leaving hospital. Although her memory has not returned, with constant prompting from her parents and carers, she is able to use cues to retrieve information such as a name, an address, or her weekly routine.
"She can usually get the word if you give her a clue, like the first letter, and if you've got the first word, she can get the next one," says Alan. "Music is a great prompt. If you sing a couple of notes, she'll get the rest of the tune. What we need is the clue, then she can get the rest. We need the key to the door. We keep working at it, so one day she'll be able to make the keys for herself."
Pat and Alan work constantly at trying to improve Debbie's powers of retrieval and association. She is easily bored, and they are always looking for new ways to stimulate and engage her. She is learning the piano and the trumpet, which she used to play well. Her parents encourage her to do as much as possible for herself: when she is asked a question, they don't let her get away with guesswork, or finish her sentences for her.
"We look at the brain in the same way as a muscle in a broken arm," says Alan. "The more you exercise it, the more stimulus we can get in there, then just maybe the stronger it will get."
When you ask her a question, if Debbie knows the answer, she is quietly pleased. If she doesn't, a cloud crosses her face and she stares at a fixed point, looking slightly lost. Her parents are not sure how much she understands about what happened to her.
"If she does, she doesn't talk about it," says her mother. "But she may be more aware than you think. The other day, out of the blue, she mentioned Lee: 'When am I seeing Lee again?' I said, 'I don't know, does that worry you?' She said, 'No, I've got you and dad.' Who knows what goes on in her mind?"
Her father has a nagging doubt that Debbie may have intimations of her life before the illness. The thought is unsettling, because it's hard to know whether this awareness causes her pain.
Debbie does seem happy, surrounded by loving people, her parents, Ann, her carer, and her best friend Nicky, whom she grew up with, and with whom she spends a day every week. She looks for eye contact and often grins and gives a cheery thumbs up. She seems to look for external reassurance, perhaps because her interior resources have been diminished. Not even a picture book or a soap opera will engage Debbie's attention.
"She won't ever sit in a room on her own," says Pat. "If you put the Music Channel on, she likes that, and she will sit for a couple of minutes on her own, but then she will get up to find you, and see what you're doing."
Debbie resists being labelled disabled, and always insists that she merely has a problem with her memory. She cares about how she looks, and likes to get her hair and nails done. Apart from this, I wonder if Debbie has a sense of herself, of who she is?
After a long pause, her mother answers, "No."
"Bear in mind," Alan says, "she only lived on her own for one week. She didn't have a chance at her own life. She's like a five- or six-year-old, lovely young kid."
"In lots of ways she is not the person she was before her illness," says her mother. "But in many ways she's the same. The first thing that came back was her sense of humour. And she's generally happy, which is good, because it makes life much easier for all of us."
Debbie was not always so cheerfully disposed; before the illness, according to her mother, she could be moody. Now she seems eager to please, which may be a result of her new dependency. The one thing that distresses her is the fear of being separated from her parents. When they were discussing moving house, Debbie became convinced that she was going to be left alone.
"Boy, was she upset," says her father. "We tried to comfort her, but for about two days she was really flat."
"If she gets upset for any reason," says Pat, "you've got to remember that five minutes down the line she can't remember what's upset her, or what's made her unhappy. She just knows she is."
For her parents, Debbie's illness turned their world upside down. They led very active lives, and Alan's work as a photographer took him all over the world. They acknowledge that life as they knew it ended when they flew back from holiday to attend Debbie's bedside at the hospital, where they would remain, more or less, for a year. The exhausting, stressful business of full-time care has taken its toll. With Debbie constantly present, they can't even clear the air with an argument.
"You stop being a couple," says Alan, "and you become carers."
Debbie's boyfriend Lee stuck by her and helped her family for a long time after the illness, but eventually left, and will soon be getting married. While immensely grateful to Lee for everything he did, Alan still feels desperately sad.
"Lee was her partner. With him walking away, that was Debbie's last thread of normality," he explains. "Now she was a disabled person living with her parents. It cut my heart out."
The family have been forced to adapt to their new circumstances. They are planning a move to Lincolnshire, where they are building an extension on a house, for Debbie to have her own apartment. Debbie's progress continues, albeit slowly. Occasionally, her parents are rewarded when a memory or a skill surfaces. Recently, for the first time since her illness, she started whistling.
"She does not have a bad quality of life and we just try to improve that, and not give in," says Pat. "We just keep on working and hope that she will keep on improving."
