En coup de foudre

Lightning_strike_jan_2007We have something to celebrate. I hesitate now to take anything for granted but after three and a half months, I am starting to relax about Elodie and the condition she developed nearly three years ago.

M.E. (Chronic Fatigue Syndrome) is a pernicious illness that robs its victims of energy, fun and eventually of confidence. Elodie has always been a dancer, tapping out steps, weaving her arms through the air while talking, eating her breakfast or brushing her teeth. From a little girl, dance was her emotional language of choice.

M.E. rendered her mute.

In the grip of the disease, Elodie had no energy for dance classes. She had scant energy even to stand or walk. Her world shrank to the four walls of her bedroom as others failed to understand that no amount of rest would alleviate her tiredness. Her joints ached, her periods stopped, she suffered hot flushes and a racing heartbeat. She could not sleep, then would sleep for 16 hours, only to wake exhausted.

I tried to be supportive but a little voice whined, ‘We’ve already done this. We’ve been the mother of a sick child and it didn’t end well. This is not fair.’  I reasoned with myself – after all M.E. is not leukaemia –  but Elodie’s mood as her illness progressed worried me. In desperation sometimes I pushed her to do more than she was able, because I wanted the old Elodie back. I got cross, unreasonably frustrated with her for being ill. It was not a great time in any of our lives. And then something happened.

At the beginning of July, Elodie began the Lightning Process. The LP is is a three-day course, the details of which I choose to remain vague, because it worked.

Collecting her after the first day, we drive a pretty route home and at the top of a hill, Elodie asks me to stop the car.

‘Come on, let’s run!’

She outstrips me, but this amazes me slightly less than the fact that Elodie is no impulsive free spirit. She’s a planner, a meticulous planner and lover of order – in other words, not a person to run a crazy race like the one we’re now running. She reaches the bottom of the hill, turns and sticks out her tongue with a grin.

Over the next couple of days, her face regains colour. She holds herself differently, speaks with new energy. And she laughs. On the fourth day, I’m at work when she texts me a photo of herself back from a run – not a short, exhausted walk to the bus stop with the worry she would not manage the day, but a proper, mile-long run.

We wait for her A Level results and she tries not to worry that her illness during exams might have stopped her doing well enough for her chosen university. Our wifi is down on the morning results are released, so for the best phone signal we find the highest part of the village. We sit on a bench in the churchyard, metres from Juliette’s grave, when we learn that Elodie got the grades she needed.

A month before her course begins Elodie takes a physically demanding job in a restaurant five miles away, to which she sometimes has to cycle. Three weeks ago, she started university.

I’m crying as I type this, because it’s reminded me again of this miracle from the blue. It was truly a blot of lightning. I don’t care how it works – only that it has. Even if this is a temporary remission from symptoms, Elodie now knows she has it within her to be better, to be well, and that is very powerful.

Elodie deserves to be well. My daughter has suffered more than most 19-year olds should ever have to bear. She’s dancing again, and I don’t just mean classes. I mean the foot-stretching, arm-weaving, body-curving expression of all that is deep inside.

I am so proud of her beauty and strength.



After Juliette died, it was inconceivable that anything bad could ever happen to us again. I think this feeling began in fear but on a deeper level and I know how terrible this sounds, I believed Juliette’s death was a brutal inoculation that would protect those of us she left behind. We couldn’t suffer any more pain.

It being life and everything, of course that couldn’t last. Viewed coldly, when you walk the invisible tightrope of mortality and are made to watch the premature fall of someone you love, you can’t stay blind for long to the fragility of life and luck.

Right now, Elodie is ill.  It isn’t life-threatening and she’s not ill so much as horribly, desperately tired. It’s been getting worse over the past six weeks. At first she would come back from school and fall asleep on the sofa, then be unable to find the energy to revise for her GCSEs.  After a while she couldn’t even summon the energy to worry that she was falling behind.

At the moment she’s not able to do very much more most of the day than lie in bed or on the sofa, and has had to pull out of the remainder of her exams.  This might sound like a dream for lots of teenagers, but not Elodie.  Unlike her mother at the same age, she is hard-working and diligent and this lethargy is totally out of character.  Apart from school, she’s had to stop dancing – the love of her life since the age of two. She was doing fourteen hours a week of classes until Easter. Now she hasn’t the physical strength for anything much at all.

The official diagnosis is post viral fatigue though she had a second round of blood tests yesterday to rule out any other problems.  The consultant she saw told her he is fairly certain this is what she has and that at best she will recover in three months, but it might take as long as a year.

She’s sixteen, so this feels like the end of the world.  No certain exam results that will take her to the sixth form college she’s chosen, the prospect of having to study for an extra year, no parties and certainly no dancing.

As her mother I feel so helpless, and angry too.  I want to be able to fix her so she can get on with her life and although the circumstances are different, these feelings are painfully familiar.  I am reaching inside myself to stay positive and for the strength I’m not convinced I can always muster.  I know that what she has isn’t dangerous but I’m pissed off that she’s having to go through this, when in her few years she’s already had to cope with so much.

That’s all. Nothing profound to say. Tomorrow I’ll do more research on treatments that might help her fight back. I just wish it had picked me.