A piece of non-fiction from our lovely Cheryl, who needed to vent and a space to put it.
But I want to write something.
I am so bloody tired of everything. Five child-free days in Toulouse was wonderful, despite it taking me three days to wind down enough to not have a constant headache from grinding my teeth and another day to get my linguistic ear in.
Coming home and here I am again. House full of clutter, marriage full of clutter, relationship with children full of clutter.
All I want to do is escape, either physically or into my head. I want everything to be smooth and easy and not require charging at night. I read until the small hours because I can’t bear what happens when my brain isn’t busy doing something. I can’t pause during the day because I will start thinking and feeling. I can’t bang out werewolf porn as a distraction because writing, even crap writing, requires a certain amount of internal stillness in my inner pool so that the thoughts can rise to the top. I can’t get out for a walk in the air because my fucking hips hurt and the cold air makes the bloody fibromyalgia worse the next day. Nothing is laying in chicken-world so I don’t have the distraction of hatching things.
The house is full of specialist lifting equipment, wheelchairs, chairs, beds and bath-aids. Nenna wants to hold her drink by herself and unless we supervise her constantly it spills. Everything is covered with juice. Sofa, floor, chairs. The carpets need cleaning in the living room and in Leo’s room as well because the cat is still disgracing herself occasionally. There is paperwork coming out the wazoo. If Nen doesn’t have her splints and her shoes on all the time, she slips and falls, even with the walker.
And you know what? I can’t bring myself to fucking care about any of it.
Arvo and I are living our lives, our marriage, in the cracks between caring for our child. Leo is living his life there as well. Everything revolves around her. Our entire life is about her and her next move, whether that’s forward or backwards. And today, I fucking resent it. I resent coming back from my five days just being me, just being Chez, who’s in love with Arvo.
I resent that I have a future that involves changing adult nappies and using a bath-lift and knackering my back lifting someone who doesn’t have muscle control. I resent that we have to spend an hour and a half every day tube-feeding. I resent the time I spent on stretching exercises. I hate not getting proper sleep at night because when she wakes I lie there, rigid, waiting to see whether one of us is going to have to get out to turn her.
I resent the fact that I resent it all. I resent the fact that I am angry all the time. I resent the fact that I’m forty three, I am four stone overweight, I am too tired to be funny, too tired to be creative, too tired to cook a fucking meal, sometimes. I resent the time we both spend having counselling about all this. I resent the time I spend filling in forms, talking to physiotherapists, talking to social workers. I resent not knowing where we are going in the future.
I resent that my beautiful, clever, funny, amazing daughter, who I love so much it hurts, is not going to have the life that she should have had; and that we will not have that life we should have had with her.
I resent the fact that our entire fucking life has been hijacked by one measly gene fragment that doesn’t even have the decency to be easily found.
Welcome to fucking Holland. It’s shit here.