Logging onto this familiar page I see I haven’t written here for over a month. Preferring the ease of instagram, a few words splashed across the web from my phone, no need to get up, turn on the computer, wait for internet or choose images. Its still blogging, just shorter, sharper. I write everyday in one way or another. Personal pieces, work reviews, fantasy novels, journals and social-media-captions. Sometimes it’s just so that I don’t get stuck, my red diary pages stuck together with tears and ink blotches, spilled tea and laughter lines. Sometimes it wards of loneliness, sometimes it’s just to connect, to share, to document and recently, to remember. It helps me make sense of my ride and I hope it helps you on yours too.
Today I want to remember. So I choose to log on, open up, splash some more words across the web and bleed just a bit more publicly. It’s so nearly time for this baby of ours, just a couple more weeks till we’re all on the same side of my womb. It feels like the calm before the storm, or perhaps I’m now in the eye of it. My body’s erily still, and yet full of life. I move through days that seem to blur and bend, my body stiff and achey, bloated, acidic and sick. Something pushes deep inside and my tummy pokes out of my too-tight-top. My love cups a hand to his ear and presses into my belly “You’ve got two hearts” he says. And I smile at the magic in his words.
The storm’s eye swirls around me, but I feel a strange calm, willing it to pass, dreaming of entering the storm clouds once more and looking for the sun on the otherside. A clarity I’ve never felt seems to float around me and mundane things that once worried me; deadlines, banks, tax, bus passes, all seem irrelevant and petty.
Instead one great big fear rears its monstrous head. A fear so big I haven’t been able to voice it. Name it. Naming things makes them real, makes them true and till now there’s been so much else to distract me. But finally in this new state of calm I see my fear. I see it more clearly than anything I’ve ever seen. And, somewhat strangely, now I see it, I am no longer afraid. Now I see it, I feel only pride.
The fear is this; That after the birth of our beautiful baby, the powers that be will witness me having a Tonic Clonic Seizure. They will witness it and deem me unsafe and unfit to be a mother. They will say that my Epilepsy makes me a risk. And they will take our babe away. And I will be helpless.
That is it. That is the deepest, darkest place that fear of epilepsy takes me to. I am writing this for all the other epileptic mummas out there who perhaps fear this too, for everyone who feels that they have to keep epilepsy a secret. I am writing this because I know that fears feed on darkness and secrecy. Show fear the light and it shrinks down. I am writing this because it is my truth and it is the reality of what living with Epilepsy actually means. In writing about it, talking about it I realise I am no longer so afraid of it. Instead I look at the words and feel pride that I face this fear. I am stronger because of it. People without epilepsy never have to deal with thoughts like this. Epilepsy is grim, it’s grip tight and smothering but by speaking about my experiences I hope that I can find a way to the light behind it and see that I really am strong and I really can endure and our baby will be safe because of that.