“I don’t think I like bed, I think it’s a necessity. It’s not just a place of relaxation, it’s also been a place of pain and illness. I redecorated my bedroom a couple of years ago because I’d got to where I wasn’t in bed all the time. I felt I had to change the paint and everything because looking at those same walls was still like that level of illness.
When E was smaller he would come in because he used to worry about me. He would lie there and watch me. One time he said, “I’m scared you’re going to die,” so he would come in just to make sure I was OK. I had a DVD ‘Spring, Summer, Autumn, Winter’, it’s a Korean film. I had it on constantly, it was my background company.
It’s so gradual when you come out of it you don’t really realize you’re coming out of it. It was a struggle just to lift my top half up just to eat something. To get to standing and to make a cup of tea in the kitchen probably took me about eighteen months. I can remember crawling to the toilet. When you have a down day you have to remind yourself what you used to be like.
I do this thing in the morning. I lie in bed and say ‘Ok body so today we are going to go out on the bike so I’m going to let you have five minutes in bed. Then we’re going to have breakfast and then we are going to do a bit of cycling but I will let you have a rest afterwards and a nice dinner. I tell my body what it’s going to do in the day so it can cope with it, and the little nice things in between. I’m going to look after it, give it some nice food.”
“If I’m in a good mood and I’ve got nice things to do then I might suddenly hop out of bed and not even realize I’ve done it. And I think ‘Oh I’ve got up!’ and I’ve surprised myself because I didn’t know I was about to do it. At the weekend I wake up early and I’m full of bounce.
I actually like to have this bed to myself. I totally relish that we don’t always sleep together because there is some level of choice to be together or not. He will eventually move in because financially it’s just ridiculous and the boys are growing up. But I’m concerned how it will be when he’s just here every night. It’s a huge bed so we can actually both be in it and quite far away from each other.
I need that space to myself every now and again because I’m out there teaching and I’m with people a lot. I actually need that down time and sometimes I can only get it when I go to bed. I don’t have to be engaged with anything out there. I can be up near the clouds. I feel like I’m up in the sky, not on the ground and what’s going on down there.”
“I just did this show around Deafness and hearing loss. During one of our rehearsals the director said to me ‘Go through your poems without your hearing aids on. I just want to see if it makes any difference.’ So I did the whole thing without them and she said ‘You’re so much more fluid and less self conscious, you’re taking more risks without them.’
There is a real safety in having my hearing aids but there’s also a limitation. I wouldn’t take off them off in front of just anyone. It’s another kind of boundary, it’s another thing to work through because I feel really vulnerable without them in. I’ve never slept with someone who’s also Deaf, who also wore hearing aids. Everyone I’ve slept with has been a hearing person or someone who I have had to explain my Deafness to.
Part of choosing a partner is that I need to be with someone who’s patient and wouldn’t judge me because of it. I’ve had situations where I’ve been almost about to sleep with a girl and I’ve taken out my hearing aids and she’s been ‘Ooh let me try them !’ or ‘I feel so sorry for you’ and I’m like why are we talking about this when were about to do something much more interesting.
Sleep is a very vulnerable place. When I was given my first pair, I must have been about 9 years old, I said to my dad ‘You know what this means ? It means that I’m probably going to die in a house fire because I won’t hear the fire alarm.’
When I wake up the first thing I do is put them in. I make my bed. I have breakfast. I wash. I take them out again before getting in the shower. Putting my hearing aids in is like a part of waking up. I’m very practical in my bed. I sleep. I have sex. The writing I do there is always planning – today I’ve done this, tomorrow I’m going to do this. It’s kind of puts me in a mode of OK, I’m here. It’s a way to mark the day and mark the day that is to come.”
“It’s a painting people either really love or hate and it was given to me by a really good friend of mine, J, around the time I split up with my abusive ex-partner. Me and her and a couple of other people had got together to create a fund-raising event for victims of domestic violence in Brighton. It was meant to be small gathering in a gallery but it turned in to something with actors, singers, bands, disco, raffle, the lot. It was tremendously successful. We raised about £22,000. How we did it I don’t know.
J lived in an old workhouse which had big big walls. I saw the painting on the wall and I was quite taken by it. I think because where I was in my life and also what we were doing everything seemed to be very relevant. I said ‘Oh I love that painting’ and she said ‘Oh you can have it’ which was ridiculously generous but that what she’s like.
Quite interestingly most females like it and most males feel quite unnerved by it. I don’t mean I’ve had hoards of males in my bedroom, just friends of mine who’ve seen it. It’s got an injunction on it and can’t be exhibited. The painting is actually depicting a painter who got done for abusing his younger sitters. It’s of him with his fingers crossed behind his back and a woman looking a bit vulnerable on a chair on the other side. His lawyers thought it was defamatory to his character as the most ridiculously overpaid over copied painter in the world.
It feels like a talisman in a way. I quite like the irony that the only place it could fit in my house is over my bed. I like that a lot.”
“You and your mother went to get some bedding without my say so. They came back with a sort of dusky rose Oxford bordered damask kind of number which I did not like at all.
In my defence, as a visually impaired person, I have to rely on what people tell me.
I don’t 100% understand the colour or its significance or whether it’s going to insult her. The feel is very important when trying to buy duvets with her. We went to John Lewis and I don’t think there was one duvet cover she would accept.
It makes me sound awful !
We tried Habitat.
Did we ?
Yes we did and then Heals.
And I didn’t like anything there ?
No, we couldn’t afford it. The one you liked was like ninety quid or something.
See this is the problem, my taste is bigger than my budget.”
“My bed feels like the ground beyond the ground, like a sort of peaceful tent. That’s what sleeping in is, when time is this strung out piece of string, it’s not the jammed together stuff in your day. You get in to bed and it opens out in to this big vast net and you go I will just get up when I fancy.
There’s this narrow margin of thinking time before you get up and do the things in your day, where your brain is calibrating back to here and newness and what am I doing today again ? I suppose, depending on how busy you are, how much you stretch out that band.
When he’s there sleep is definitely not as good. No, God no. It’s only been a few months so I’m still getting used to it. He complains that I chase him in the night which I do. I go for little walks and find out he’s squished one end of the bed and I’m there with my arms out. He doesn’t carry a book on him so he takes one of my books and I have to say read this. But when we do it’s really good, we read poems to each other. It’s usually poems I’ve picked out.”
“We haven’t done it for a while but we generally do what we’re grateful for before we go to bed. We both started that quite early on in our relationship.
I did remember having a really funny moment in John Lewis well after we’d got married because we had some vouchers and were choosing gifts for ourselves and I thought ‘Oh my God I’ve never bought a duvet cover with anyone !’ and stressing out about that more than getting married. It was hilarious.
He was ill recently with a migraine for about three days and I slept on the sofa. I loved that, it felt like camping. If I’m really in the mood I shave my legs and put talc in the bed and get in completely naked and just luxuriate in the sensuality of that kind of exotic, erotic potential of what it could be.”
“Everything has to be white. The pillows have to be white, the sheet has to be white, the duvet cover has to be white. It’s something to do with hotels. I think it’s probably about permission, about saying now I’m on holiday. Of an afternoon I can lie down and nod off within minutes but when it comes to bedtime sometimes I’m lying there for hours, so my heaven becomes a bit of a hell at night, to be honest.
I dream a lot at the moment because I think I’m going through a period of change and transformation. Usually over a coffee I either grab my notebook or just reflect on what did the decrepit building mean or why was I lost at the festival, where were all my friends ? Initially when there’s been a really vivid dream I feel quite disturbed but once I try to see it as a message I feel more reconciled to it.”
“Before I got sick I used to think of sleeping as the ultimate sensual pleasure, being able to lie on a bed and be warm and comfortable, snuggled up under the covers. It was the greatest pleasure I could think of.
When I was a child we were very poor, we always had plain white patched up sheets. I thought they were boring and it reminded me of how poor we were. So at one point in my young life I decided that when I was a grown up I was never going to have white sheets again. They were always going to be colourful, whimsical or weird.
It now feels wonderful, pulling the covers right up to my chin, sometimes even over my head, and feeling safe and protected because I know it’s my bed. I know this time no one else can infringe on that. I think that’s more important to me because I’m an abuse survivor. It feels like a refuge.”
“When my old flatmate moved to the States he threw out a number of things including his duvet cover. There’s nothing wrong with it. I rescued it and since then the duvet cover itself is called Craig Thomas after him. Then I have a fleece on top of the bed which I can lie on in the day. It was given to me by my friend Maxine, so that’s called Maxine.
One of my pillows was a present from my friend Nathalie but that pillow isn’t called Nathalie. I also have a tiny stuffed toy reindeer from her which she gave me the first Christmas I became ill. He’s called Lars. There’s a lot of naming around my bed.
I don’t usually confess to this because I’m such a snob, but when I can’t sleep I read celebrity gossip on my phone. Sometimes I’ll do an online search for somebody I have a film crush on, like Colin Farrell or Owen Wilson. I’ll see their current relationship status and have a little two minute fantasy about meeting them somewhere unexpectedly like on the canal. I don’t know if that counts as reading or just internet stalking.”