SAVED FROM A LIVING DEATH
by Esther Rantzen
For 14 years, Esther Rantzen's daughter Emily had her life destroyed by ME. Trapped in a wheelchair, wasting away, she wanted to die. Now, thanks to radical "mind over matter" therapy, she's cured herself.
Emily sounded so jubilant when she rang me today that my heart lifted as I heard the energy in her voice. "I've had the best morning!" she said.
For 14 years I have watched her struggling like a fly in a web while the sticky strands of fatigue paralysed her. Now at last I can say it: Emily is well.
But the years of illness and disability have taught us both lessons we would rather not have learnt: about trying to keep real hope alive, keeping false hopes at bay and coping in a world that is all too often blind, deaf and uncaring towards disability.
My daughter's illness had crept up on us with a seemingly gentle gradualness. I would rather it had struck hard and quickly, then at least the medical world might have taken it seriously.
At that time chronic fatigue, ME, was widely derided as "yuppie flu", and I admit that I, too, had thought it was a cranky disorder.
When I saw my once active, energetic daughter walking heavily upstairs, and struggling to get off a sofa, at first I put it down to teenage lethargy. Now I know better, I can date the onset of the fatigue. It was triggered by a brief bout of glandular fever in 1992 when Emily was 14 – a common enough illness in young people, but she never fully recovered.
She went back to school after a week or two, but from then on she was overcome with a tiredness that sent her to sleep in the library or at the back of the class.
She took herself to the gym to try to force fitness back into her muscles. It had the reverse effect; she told me the staircases in the school buildings began to look nightmarishly like mountain ranges to her, she couldn't face having to climb them.
She went to the school nurse, who "counselled" her, mainly about the depressing effect of my career on her emotional health. Emily argued with the nurse, and never told me. I would have left my job in television instantly if Emily or I had thought the school nurse was right, but this didn't look like emotional depression to us.
Indeed, emotionally Emily was amazingly stalwart. During the next two years she had longer and longer periods off school and in bed, missing out on two-thirds of her education, but she still managed to catch up on her own so that her grades at GCSE were a perfect clutch of A-stars.
Once again, looking back, I realise that effort was the last straw. The next term she collapsed, and left school permanently.
At this point our GP referred her to a neurologist, thank heavens. Had we been referred to a psychiatrist, as many ME patients are, I might have come under suspicion of abusing her, been diagnosed with Munchausen by Proxy, and told that I was deliberately causing my daughter's illness myself.
It may sound far-fetched, but I have met families to whom that has happened, and mothers who not only had the anxiety and distress of a child's illness to deal with but the hideous experience of having to defend themselves against accusations of abuse.
When a child's illness baffles the medical profession they sometimes look around for someone to blame, and mum is often the nearest and easiest target. I have campaigned on behalf of parents and children who suddenly found a care order slapped on their sick child.
I've heard of terrible scenes when screaming children were torn from their parents' arms and locked in closed psychiatric wards. I know of one father who went to prison rather than allow that to happen to his son.
Luckily our consultant neurologist was one of the few at that time – this was 12 years ago – who recognised ME as a genuine illness, and told us that Emily was a classic case.
There wasn't much he could do, and he was quite honest about that. He told us that nobody knows what causes ME or how to cure it.
He put her on a management course – to increase gradually what she could do – which she stuck to heroically, alternating two-hour periods of activity and rest all through the day.
But in spite of all her efforts, I watched the illness take over her body. She became hypersensitive to light and noise so that she had to wear earplugs and sunglasses constantly, and we lined her curtains with blackout material.
She lost the capacity to walk upstairs, so we installed a stairlift. When she was unable to walk at all, we got a wheelchair for her. In the end, she spent all day in bed, eyes shut, earplugs in. I used to come home from work and run to her room. She was sheet-white, and her limbs were cold.
Desperate to try and find a way to keep her positive about the body that had become her prison, I would massage her legs, which felt completely lifeless. ME is not officially a life-threatening illness, but this was a living death.
We soon realised the lack of recognition had led to a stigma being attached to the illness. A local GP told me that ME was simply a malingerer's charter.
Another GP confided to me that he couldn't admit to his colleagues in his own practice that he was suffering from (less severe) ME, because he knew they would lose confidence in his sanity.
To try to counteract this prejudice, we were asked by the ME charities to go public about her illness, and Emily agreed.
Instantly we were inundated with letters from other patients and their desperate families. They told us of being sent away from GPs' surgeries with a pat on the head and a bottle of antidepressants. (Emily also had very low dose antidepressants for years, to cope with her dreadful insomnia.)
They told us that local education authorities refused to allow children with ME to have tuition at home and that husband and fathers with ME were refused benefits.
And because the illness had always been denied funding for research, the quacks had swept in. They wrote to us about a thousand different "infallible" cures: cold water baths; aloe vera drinks; oxygen at night; dowsing; feng shui; vitamin transfusions; magic crystals.
We were advised to put Emily on a sugarfree, wheat-free diet. We were visited by a "white witch". I was told to rearrange all our furniture along the ley lines in the earth, to pick up mystic vibrations. We were sent copper bracelets and amulets, and a dozen self-help books.
We were grateful, but far too sceptical to believe in – or spend money on – these "miracle cures".
I know other families who have bankrupted themselves chasing nonsense around the world, and I understand why.
Watching someone you love being slowly overwhelmed by a terrible illness with no possible treatment or cure is heartbreaking. When that person is a beloved child, it is unbearable.
My way of dealing with it was to stay stupidly positive. It was unrealistic and irrational, but time and again I would reassure Emily: "You will get better, I know you will."
She'd always trusted me, but this was a step too far. "How do you know, Mum, how can you be so sure?"
The truth was, I needed to be sure, for my own sanity.
Our neurologist told me: "I keep expecting her immune system to click in." But it didn't. At one stage he took her into hospital for six weeks, where they put her on a "baby steps" regime, teaching her to endure one minute more each day with the curtains open, to write one more word a day, to take a single step each day, and very slowly build up her strength.
It worked, a little. When she came home she was able to sit for a short time in a chair, and eventually get back to her wheelchair.
I remember watching her flop into it like a rag doll. I saw her fall back on her sofa, face deathly pale, eyes rolling upwards, as if in a coma, and those images will stay with me for the rest of my life.
Step by baby step she improved enough to drive with me around the suburbs to see the spring blossom, or on short trips to the country, anything to get her out of the house, her prison. Often she would spend the drive with earplugs in and her eyes shut. Sometimes she was swept with gusts of despair. I remember her screaming in my face: "I just want to die, Mum. Help me die."
I wonder whether I will ever experience anything worse than hearing that howl of pain from my daughter.
Still in her wheelchair, she tried to involve herself with activities with her friends. And although they were brilliant – so supportive – her illness made Emily terribly isolated and lonely.
I remember one birthday trip to the theatre. Not only was it difficult to find a show in a theatre with good wheelchair access, when we reached our seats we discovered the stage was almost invisible, they were so far to one side, and the wheelchair was blocked by a parapet. We also discovered that most restaurants have steps which make wheelchairs tip at a dizzy angle, that doors are too heavy to push with a wheelchair to propel in front of you.
It was an education. A year ago, watching my daughter beginning to flag again, I realised that Emily's fatigue was getting worse. By then we had taken out the stairlift, (what a wonderful day that was), and given away the wheelchair.
It had taken a long time – six years – but by pushing herself every day, step by step, Emily had got herself to the stage where she could walk. She'd even managed to sit her A-levels and was offered a place at Oxford.
At last Emily had begun to share my implacable optimism, and believed she might have a normal life like her old school friends, with a job, and parties and independence at last. So I watched in horror as her old pallor began to return, and with it, the tiredness.
When I held her hands they were icy. As I watched the fatigue remorselessly overcome her, and she lay on the sofa each afternoon, and struggled to get up each morning, my heart sank like lead. I had seen all this before. Would we have to install the stairlift again and bring back the wheelchair?
Six months ago we heard about the Lightning Process from Jill Moss who founded the Association for Young People with ME (AYME) and had seen it work well with a member of her family.
As explained in Good Health last month, The Lightning Process is based on the theory that ME is an illness that affects the body's capacity to deal with adrenaline. This is the hormone the body releases when stressed – in people with ME the levels are abnormal, and they need to "train" their brain to normalise the body's response.
The first step is to tackle the thoughts that trigger the stress reaction – halfway through a negative thought they have to tell themselves to stop. This stops the stress response, and in theory creates new connections in the brain, stimulating the production of endorphins – feel-good brain chemicals.
At £600, the course – in Crouch End, London – wasn't cheap. But Jill doesn't believe in miracle cures any more than I do. She thought it was worthwhile, so Emily, now 28, enrolled. It took three days.
On the day after Emily finished the course I went down to our kitchen and found she had got there before me. There was a sparkle in her eyes I hadn't seen since she was 14. I asked what had happened. "I've done the Lightning Process about 30 times since I got up," she told me.
I continued to watch her all morning. Every few minutes she would talk to herself, coaching herself to withstand the fatigue.
It's a process that takes effort, and I understand that it doesn't work for everyone.
But with joy and relief I am now confident the Lightning Process has worked for Emily. After six months she has started a job, working with children. She has a full, active social life.
I can give up being irrationally, stupidly positive and optimistic, because now, at last, I have a good reason.
Emily is well.