My eldest daughter, Grace, has an appointment coming through to attend Great Ormond Street hospital. If you don’t already know this (and why would you) Grace suffers from epilepsy. More specifically she has ‘absences’ – little moments where she is not with us, her eyes are vacant, she won’t respond to your words, or indeed anything at all. She will shuffle her feet sometimes, or occasionally mumble something unintelligible.
The absences can last from a couple of seconds up to about half minute. In medical parlance they are referred to as atypical complex partial seizures. The ‘atypical’ is important because it seems that Grace’s seizures are more difficult to treat because they are… atypical. The absences aren’t as obvious as the grand mal episodes that the layperson commonly perceives an epileptic fit to be like, but they are just as pernicious. Just as distressing. Just as debilitating.
These absences take so much away from us. From Grace, obviously – moments of time are lost when that internal circuit is tripped. It makes learning incredibly difficult for her. How can one comprehend anything when the explanation is littered with gaps? Try reading a book with half of the pages missing and see how much of the plot you can follow? It’s a wonder that Grace has learned to speak. Academically the absences have stunted her progress considerably.
But Grace’s epilepsy takes from us, too, the people that love her. It’s one of the most crushing moments I have ever experienced to be in the middle of a magical moment with Grace – perhaps playing, dancing or some such japery, Grace is laughing, or giggling in her fulsome joyful way, when – THUMP – the circuit is tripped. Her smile fades, her eyes become blank and unfocussed, her laughter drains away in a fraction of a second. The moment is gone forever. And when she’s back with us the moment cannot be recreated. She may not even remember what she was doing before the curtain came down. Sometimes she will remember, but it’s too late because that serendipitous moment, that magical unplanned, unscripted completely perfect moment, has gone forever. And like anything in the past, you can never get it back. Time’s arrow goes only one way.
We’ve tried a multitude of largely ineffective drugs. At the moment Grace has two separate drugs morning and night. They are supposed to stop the absences completely, but they do not. No drug has ever stopped the absences.
Apart from one, actually. Steroids. Grace was temporarily put on steroids – just for a month. And they worked! The absences stopped. We had a different daughter, one with much more confidence, one who was with us all of the time. But it couldn’t last because you can’t just take steroids forever. They can damage you, especially a child. They are generally not a good thing to ingest. So hope was given, and then hope was taken.
But, Grace, my girl, hope is never lost. In the words of the great Walt Disney we will ‘keep moving forward’. Perhaps Great Ormond Street can help? Perhaps not. But whatever happens we will be here for you forever. Onwards.
We will keep fighting for your absences to one day be… absent.