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.

therapy

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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I am not grateful to my husband.

On a day where the Western World seems to have chosen Hate over Love. Fear over Hope. I thought I would share this little piece of feminism I’ve been working on.

The scene; An autumnal tea at a friends house, roaring fire, multi-generational, green-and-pleasant-land-image. Baby playing happily. Olders chatting away. Baby starts grunting. Everyone stops and looks at her. ‘ahhh pooing?’ they smile and nod, glancing at me.

‘Pass me the bag’ my husband says, grabs the baby and heads out the door to change her. As he’s leaving people turn, astounded, to me. ‘Wow, he’s well trained’, ‘that’s impressive’, ‘I was never that lucky’, ‘mine never does/did it, especially not in public’

(A: Well why the fuck not? Because they had dicks??)

Another scene: I am doing a days (paid) work. First question I am asked is ‘but where’s your baby?’ (A: err I left her in a crack den…)

Another: In the hairdresser ‘ but where’s your baby now’ – (A: I bought her a round the world-solo-travel-ticket obvs…)

Another: Sitting in a group of women all jiggling babies, discussing the depths of tiredness that parenthood has introduced us to; ‘Your husband GETS UP?! Like IN THE NIGHT? AND GOES TO WORK?’ (A: yeah because strangely enough, regardless of genitalia we are both humans and humans whether their ‘work’ earns money or not all need to sleep sometimes. Aren’t you human?)

…………I don’t say those answers, my sleep deprived brain’s not fast enough, I just sit and nod and brew this up. But a year into these ‘little-chats’ and honestly it’s wearing a bit thin. If I had got up to change the babes nappy do you think anyone would’ve made those comments to him? No. Infact do you think ANYONE has EVER said to him “wow, your wife is so well trained, look how amazing she is at changing nappies and cooking and cleaning and looking after the baby, you are so lucky she does all of that”…..No they bloody well haven’t.

Making his actions seem exceptional does him a disservice. It does our daughter and I a dis-service. These compliments are based solely on his penis. They are saying that basically because he possess a dick he is doing more than he should. They assume that he doesn’t WANT to do all he does, that perhaps he shouldn’t have to. That his ‘role’ is solely about money and not about time with his daughter. That due to owning said dick, he cannot be her comfort and support just as much as me. That after providing money he should feel fulfilled and satisfied, free of responsibility and duty. That anything else apart from bringing in money he does for his family is ‘extra and optional’.

That much like Trump explaining away his gross Rapist chat by calling it ‘Men’s Locker Room Banter’ and thereby casually saying that all Men condone Rape. Crediting a man for changing his own baby’s nappy implies that he is going above and beyond, doing something ‘abnormal’, when in fact he is simply being a Parent.

If we are truly going to take a stand against Sexism it is in conversations like this where we need to start. In the mundane everyday. In the way we react to nappy-changing men and working women. We need to say that Feminism is about all of us, it’s about creating equality for men as much as for women. It’s saying that men are not rapists, it’s saying that men take responsibility for their children, it’s saying that men and women are equally important.

So today I am grateful for a myriad of blessings that make up my wondrous life. But being married to a man who changes nappies and gets up at night is not one of them.

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The Best Conversation I’ve ever had

What’s the one thing you’d change about our life as parents?

I wish that I didn’t have Epilepsy.

I don’t.

Really?

Yes. Because your epilepsy has encouraged me to be a much more active Father than I might’ve been. It doesn’t make me very proud to admit, I mean, I’d always wanted to be a parent, but the way our society works I think that if you didn’t have epilepsy I might’ve just done less. I don’t think it would’ve even been conscious but, the truth is, it’s likely I would’ve done less. And I might’ve thought that was OK. And that would’ve been sad. I wouldn’t quite have known how intense being a parent is and I wouldn’t have felt so involved or bonded with our baby so early on. I wouldn’t have believed that going to work was a break or realised how Sexist society still is.

Without epilepsy I might’ve allowed myself to say things like “Well, I have to go to work, so I can’t get up at night” or (at 6pm) “I had such a full on day at work, I’m going to have a rest…” or “I’ve been at work all week so I’m going out with the guys this weekend”. Seemingly little things which add up to hours and hours of my daughter’s life. Of our life. Of experiences that I will never have again. Of seeing her crawl and wave and say ‘Papa!’ of dirty nappies and endless bottles, of  night after night after night, of 1,2,3,4,5am of laundry and cooking and trying to get a vegetable into her. Of what it’s all about, of what I chose when I chose you and we chose to have her.

It’s strange to admit but I guess we have epilepsy to thank for encouraging me to ignore Societies acceptable-male-behaviour to remind me that I am not the Babysitter I am a parent. Equal in all ways to you. We are in this together as partners and having Epilepsy in our lives reminds me of that. And that is an immeasurable gift.

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Everyone knows someone / Epilepsy Awareness week

“Stop staring” he said “Stop staring!” he jumped up and ran past me knocking me out the way as he passed.

He turned as I stumbled, confused. Looked at me again “why’s your mouth open Spaz?” he leered at me, copying my wobbly stance. “shut your mouth spaz! Shut yer mouth”.  I stood up straighter and tried to close my mouth. I didn’t think it was open. But then a second later “shut your mouth! What’s wrong with you?! Shut your fucking mouth.”

I tried to bite my lips together, my back was against the wall. A rabbit in the headlights.

………………………

Seventeen years later and tears still spring into my eyes when I remember that and my heart beats too quick as I type. The days before I was diagnosed when I was having absences continually, but hadn’t yet had a Tonic Clonic seizure. Days when I was so confused somedays I’d put my clothes on back to front. My mouth would hang open and teenagers keen to be in with whoever the people to be ‘in’ with where back then would do what teenagers often do best; seeking acceptance and recognition they return to their tribal roots, get low, get nasty and shout names. Just to look the big man. Never thinking that actually it could very well be their turn one day to suddenly not know their name. To find they’re the ones with their mouths hanging open. It could be them to wake up on the pavement with strangers staring at them and it could be them having ‘spaz’ shouted at them at the end of school.

I thought this was a good short story to share as it is Epilepsy Awareness week. The chances are you know someone with epilepsy. Even if you think you don’t, really, you do and/or you will very soon. Epilepsy is the most common neurological condition. To raise awareness and break the stigma of this fact Young Epilepsy and Epilepsy Society are running a campaign called Everyone Knows Someone . If you have a minute check it out and next time someone you meet seems ‘odd’ remember not every disability is visible. Be kind. The hardest battles are the ones people say nothing about.

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