Lynn is suffering from ME — Myalgic Encephalomyelitis — once sneeringly dubbed 'yuppie flu' and suspected of being a psychological affliction that struck mostly people who couldn't cope with the stresses of modern life. Anyone who ever thought that way would find a visit to Lynn a deeply shocking and humbling experience. 'It's like she's in limbo,' says Kay, 52. 'If someone dies, you mourn them, then you get to a stage where you know that person is gone and you move on. But Lynn is neither one nor the other.
'She is stuck in that room, not dead, but not alive properly. If I didn't believe, and she didn't believe, that one day she would get better then I don't think it would be right for her to go on suffering like this for a whole lifespan of 70 or 80 years.'
It is estimated that a quarter of the 240,000 ME victims in the UK suffer severe symptoms such as paralysis and the inability to speak or swallow for months or years, and there are probably several hundred as terribly ill as Lynn. Dr Anne MacIntyre, who wrote one of the first self-help books for ME sufferers and has known Lynn since 1993, says: 'At one time Lynn was so sick she recognised nobody, not even her parents. It is absolutely dreadful. These cases are mostly of people who fell ill in their teens, but they are hidden because no one ever sees them.
'They are too ill to get to a clinic and they are cared for at home by parents or other family. Their GPs have mostly given up on them because no one really knows what is going on with this illness.' Though only able to turn her head weakly from side to side and move her arms,
Lynn's strength of character is unmistakeable. She expresses herself through a sign language that she has developed with Kay, and smiles and makes jokes whenever she can. Kay invites people into her daughter's small room, which is cluttered with soft toys, to meet her and take photographs to convince the world this is a real illness and to encourage more research to find a cure.
To describe the pain she is in, Lynn makes stabbing gestures and points to the left side of her chest, sweeps her hand across her forehead to indicate her persistent headache and twists her hands around each other to represent the churning agony in her stomach.
Asked if she is fed up with being like this, she looks both angry and exasperated and holds her thumb and forefinger emphatically an inch apart, meaning: 'Just a bit!' She is very sad, she indicates, but never depressed. I am not brave, I have no choice but to be hopeful, otherwise I would just give up,' her mother translates.
The family's ordeal has been made worse by the fact that, because there is no diagnostic test which can detect the cause of ME's symptoms, many people - including doctors and nurses - persist in believing it is self-induced. But Lynn was a lively, intelligent, popular teenager who enjoyed a happy life with her family. 'We didn't realise how happy until we lost it,' says Kay.
With her mother, older brother Steve and father Richard, a former police inspector who now works for the force as a civilian, Lynn would go sailing and on family cycle rides.
She played the piano and clarinet, won prizes for ballet, and loved swimming and going to the youth club with her friends. Then in November 1991, when she was 14, she had a TB vaccination and immediately felt unwell. Lynn struggled in to school the next day but was sent home and never returned.
Lynn developed flu, bronchitis, tonsillitis and glandular fever, one after the other. 'By February she was really very ill and we were beginning to realise it wasn't just normal bugs,' says Kay.
'Her legs would give way, her memory was getting very poor, she was having awful pains all over her body and a constant, dreadful sore throat and she would often faint.'
Because of her weak legs, she had to start using a wheelchair, then the top half of her body became floppy. By May 1992, ME had been diagnosed and Lynn was bedridden, had difficulty swallowing, couldn't recognise people and her voice had reduced to a whisper.
Frequently, she would fall unconscious while every muscle twisted in violent spasms. 'That first year was so terrible, when we knew she was extremely ill but the tests didn't show anything,' says Kay. 'The first paediatrician we saw said: "It's OK, you've got a fashionable illness. It will go away in time."
'With every other disease you get kindness and sympathy, but though Lynn was very frightened and we were desperate for help, all we got was accusations that she was pretending. It was hugely upsetting.'
Cruel, if well-meaning, experiments were conducted on her in hospital to 'force' her to admit she was making it up. Nurses left her unattended for hours in the theory that she would get up to use the bathroom. This had humiliating results.
'Making it up'
Doctors once administered a 'truth drug' and questioned her over whether she was being abused at home. There was a suggestion Lynn had school phobia and Kay once overheard a nurse speculating that it was Munchausen's Syndrome by Proxy - when a mother induces symptoms in a child to draw attention to herself.
'One consultant was convinced Lynn was orchestrating her spasms at certain times of day so they took away her clock, the radio and TV and the nurses lied to her about the time. She still had the attacks at the same times.
'They abused her verbally, calling her a "silly little girl", saying "Of course you can do it" and telling her to fetch things herself. Sometimes she was in such pain and felt so terribly ill she would ask us: "What is going to happen to me?" But we had no answers for her, and neither did the doctors.'
Medical opinion now mostly concurs that ME is caused by a virus, but there is still no treatment for it besides controlling the symptoms.
At first, however, Kay was advised to make Lynn stick to a timetable of study, rest, socialising and exercise. So she would make Lynn walk down the road even when she felt weak - then had to half-carry her back when her legs gave way.
Kay had trained as an auxiliary nurse and it made sense to her at the time to keep Lynn moving. Now she bitterly regrets it, as she is convinced it caused Lynn more harm.
Softly-spoken and mild-mannered, Irish-born Kay is determined to stay positive, but she had to struggle to come to terms what she saw as her own role in Lynn's suffering. 'I don't beat myself up about it any more because that would be a waste of energy and I need every atom to cope,' she says.
Nine months after she fell ill, Lynn could move no part of her body except her little finger, could not speak and had to be fed through a tube. But Kay and Richard made the courageous decision to take her home.
'They said if we did, there was a risk she would die, but we felt there was a greater risk if she stayed in hospital and didn't get the peace and care she needed.
'For two or three years afterwards she would wake up screaming from nightmares of things that happened to her in hospital. She is still scared of doctors and nurses and I won't have anything to do with anyone who doesn't believe in ME.'
Kay left her job in accounting to look after Lynn and has never left her side for more than two days. Her marriage broke up - she says not because of Lynn's illness but unrelated problems. However, Richard still helps care for his daughter.
Lynn's brother Steve did well at school despite his family life disintegrating and now works in IT and is due to become a father in August.
Kay was only 37 when Lynn fell ill. But for her, too, normal life came to an end then. She has a carer in twice a week so she can go shopping and see people.
'I don't resent what it has done to my life but I do resent whatever has made her so ill. It's been heartbreaking to watch my child lose her faculties one by one.
'It is still very hard for me to see mothers and daughters together or groups of teenagers dressed up and laughing or to hear a family in the garden having a barbecue with children running around.
'If I lived somewhere like a high-rise flat, I don't think I could have coped. And at least I can walk in my garden.'
Every birthday and Christmas has been sad as the years have passed with no improvement, though Kay tries to make them special. 'For her 18th, I wrapped 18 little presents and put them in a biscuit tin which I iced and put candles on. Lynn said it was a lovely cake but she couldn't eat it, then I showed her what it really was.'
In her late teens, Lynn's body stopped producing oestrogen and she was diagnosed with premature ovarian failure. She has been on HRT ever since, but the lack of hormones contributed to her severe osteoporosis. She is on 24-hour pain control, plus drugs to prevent sickness and spasms.
Light and noise
Lynn is hyper-sensitive to light and noise and for years could not bear to watch television or listen to music. Now she has forgotten how to read. She has a hamster with which she plays in the afternoons and she watches the darting movements of the tropical fish in a large tank beside her bed.
She loves make-up and jewellery and choosing presents from mail-order catalogues. At her strongest she can make cards for friends. But she suffered a knock back in October. Her lung was punctured while she was having her Hickman line - a semi-permanent catheter through which she receives medication - replaced and she is now sleeping nearly 15 hours a day.
Asked what she would like to do if she recovered, Lynn signals that she just wants to do normal things. And she folds her arms together in a rocking motion to indicate her yearning for a baby.
'She has always loved children and I've told her there are many ways to have a baby even if you can't give birth yourself,' says Kay. 'But I am really hoping that once the virus which caused her ME has finally burned itself out, everything else will start working again.
'People do get better, even those as ill as Lynn. Every time I read of such a case I am pleased for them, but I can't help wondering when it will be her turn.
'If she could come out of that room, it wouldn't matter where we went. It would be enough just to feel the air on our faces, see the sky, be part of the world. Lynn tells me she feels it is all out there, waiting for her to step back into.
'It is not that she doesn't want to. She wants to so much. Who would choose to lie in bed and be injected with drugs so many times your veins collapse over the life she had as an active teenager?
'We need to find the cause'
'Yet the Government is putting money into treatments such as graded exercise and cognitive behaviour therapy - which don't help those most severely affected by ME - rather than into research to find the cause.
'Until a cure is found, the thing which would make the biggest difference to our lives would be for everyone to realise it is a real and terrible illness.
'But a lot of people still say to me they thought ME was "just tiredness". And people like Lynn are still being told: "Pull yourself together." '
For information and advice for anyone severely affected by ME contact The 25 Per Cent Group on 01292 318611, www.25megroup.org, or Action for ME on 0845 123 2314, www.afme.org.uk
|
