Do you know what it’s like?

Do you know what I see when I cook supper? When I stand at the stove and stir soup. What I see in the bubbles that wash grime off my babe? What I see when we cross roads, climb stairs, sit on a wall, splash in puddles, dip our toes in the sea, lie on the bed, look out of the window, open a door, turn on a tap, switch off a light?

Do you know? I don’t think so. How can you? I’ll give you a clue. It’s not steam and chopped squash, it’s not soapy suds and watery giggles, it’s not cars, or carpets, not bricks and muddy wellies. It’s not salt-spray and cosy blankets, it’s not a way outside or a beautiful view, it’s not running water or the soft glow of an illuminated space. It’s none of that.

And I can hardly bare to type and I’m utterly numb and a wave of guilt for sharing my pain rises up like acid. ‘Self-centered’ and ‘Narcissistic’ float around the keyboard, yet my fingers don’t stop typing as somehow I’ve learnt that I find light though black marks on white paper. I am sorry if you can’t handle it. I don’t want sympathy. I want understanding, I want to feel.

I see my arm jerk out of my control, boiling liquid pour down the oven and burn through the flesh on my babies head, I hear her scream as it melts through her skin like acid, her guts pool round my ankles. I see her limp and lifeless floating in the bath, my own head dripping blood into the tub where I’ve smashed my face against it in a seizure. I see us stopped in the middle of a motorway, confused, I turn just as a car slams us into oblivion. I see rugs wrapped round us so tight that her skins turned purple. I see her alone, face broken as I’ve hit her across the face, my muscles made super-strong by a seizure. That is my reality. That is what I see. That is what I fight. That is what I have to tell myself ‘THIS IS NOT REAL’. This is what I talk to you through. This is why sirens make me jump, loud noises bring tears to my eyes, why I am trying so so hard. This is my everyday.

I am angry and exhausted. So tired of carrying this. So tired of seeing this. So tired of seeing it all on my own. So tired that you don’t see it. So tired of understanding that it restricts oxygen flow to my muscles that makes them scream out in pain and yet still not being able to stop it. So tired of trying to find the light, to stay positive. So tired of carrying this and then daily life on top; of parenting and facing the mortality of loved ones, of everyday responsibility plus this. So tired of learning that not everyone can be my friend, that not everyone can support me. It tips me over an unseen edge and I can’t hold onto it anymore and I can’t cry silently in the shower anymore. And the panic takes hold and I sob at the breakfast table, my daughter wide eyed and confused, her big eyes questioning, asking, imploring; ‘what is it Mama? What is it?’ and I want to tell her and give her some sort of answer but I can’t because I don’t know myself. So I hold her hand and tell her it’s OK even though I don’t believe that it actually is OK. And I try not to wallow and I try just to be and I try to find breath and that elusive Zen I look for so hard.


And I try to tell myself that every day I fight this Demon adds another star to my crown. That while I stand in the kitchen, see you in person, send a text to you, whastapp, facebook, skype, my face’s smiling, my mouth chatting. I’m still fighting. That through all that everydayness there’s a sword stuck to my hand and I’m locked into this endless battle with a demon that I hope you will never see. The sword’s so heavy its broken my arm, yet I still can’t let it go. It’s burnt into my flesh, welded to the bone and I have to keep fighting or else I’ll be consumed and you might be too. .And somedays, like today the Demon is so close I feel its foul breath and somedays I wish that you could all see. That I am trying so very very hard, that I love so very much. And occasionally if my sword catches you too, then I’m so very sorry I hope you know that I never meant to hurt you. I’m just trying to stay here. With you.


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