Why is it 19 years after my daughter first started having seizures that I am at a loss to be honest when people ask the simple question,’ So how is your daughter?’
I run through my range of responses: the downright dishonest, ’ yes, good thanks’ or the ambiguous, ‘just the same as usual’ or the deflection,‘not too bad but I heard you have had terrible flu’ or the little bit more honest, ‘ oh yes, she’s had an awful seizure,’ followed up with the reassuring, ‘but she’s just gone out to yoga tonight’ or the downright disingenuous, ‘ a little bit peaky’.
You see I want to spare both myself and the kindly enquirer the awful and unpalatable truth.
So how is my daughter? Not very well really.
She has suffered from epilepsy all her life. At 7 weeks the seizures came thick and fast. Her little body stretched in all directions as the spasms contracted and exploded through her limbs, her face ruby red then milky white. Hour by hour they came, out of the blue, disrupting her sleep and destroying her days. This has not changed despite a kaleidoscope of drugs and a battery of tests.
There is no such thing as a normal day. Take yesterday, she had a 13 minute seizure at school. After her diazepam, she slept for 2 hours before going out in the evening sunshine, eating roast squash and drinking strawberry smoothie. Then as she often does in the evening sat body squashed up against mine on the steel grey sofa. Only then she passed out, her chest stopped rising and falling, her lips turned white and her head lolled rag doll style to one side.
So that is how my daughter is. Not very well really.
I do not tell the truth. It is too painful. I do not want to cry, or shout, or moan. I do not want to feel sick to my stomach in misery and groan. Nor do I want to deal with the inevitable sympathy, pity, advice, suggestions, uplifting stories, awkward shuffles, reassurance, scepticism or downright disbelief.
I love my daughter with my heart and soul, but I cannot love her epilepsy. It is a cruel and brutal condition, vicious and barbaric. It rips through her body and tears through her life. It robs her days and terrorizes her nights. It is clever, consuming and stealthy. Her life is fragile and unpredictable, a knife edge and at times worse.
It is as simple as this. She is not very well really and that will never change. But if she can live with her epilepsy so must I. I may not love it, I may not even like it but I can try to accept it. It is part of her, and if she can smile through her troubles, and put her hand in mine, I can find the courage to put my hand in hers and smile through mine.
So pardon me a little bit of dishonesty when you kindly ask me as I know you will , ‘So how is your daughter?’