there's so much going on that's not directly connected to my artwork but that impacts on it.
Just over three years ago my partner was diagnosed with Motor Neurone Disease. For last 18 months I've spent at least five nights a week sleeping on the sofa-bed at his flat. He's coped amazingly well with it, it's an awful illness that has left him completely paralysed and now unable to speak.
It feels strange to 'reveal' this – especially here.
I have an (almost) ambivalance about it – it's both essential and irrelevant at the same time. What does it mean for me, as an artist, to have a partner with demanding terminal illness? I don't want special treatment (or sympathy) and at the same time I want people to know why I'm not at as many openings as I should be, or sometimes don't get to the studio for a couple of weeks.
And then again – being with him undeniably affects me and therefore affects what I make.
I leave the studio and get the bus to John's. The TV is showing an early evening game show or soap. He's in his reclining chair, the windows are closed and the volume is up. I turn the sound down and tell him about my day – noticing that his eye's keep flicking over to the silent picture. I turn the sound up and go to the kitchen to make some dinner. John needs a soft diet now, sometimes I long for something with some bite but can't be bothered to make two separate meals. Because I have to spoon-feed him we usually share one plate and cutlery, it's easier than all the changing around. After dinner it's more TV. The night care staff tidy away the plates and do the washing up. The flat is set up for John and there really isn't any space for my stuff so I sit with John in front of the TV. At about 11.00 I help the carer get John into his wheelchair, he takes his medicine and they go off to the bathroom. While John has his teeth cleaned and face washed I make up the sofa bed. I assist the carer undressing John and lifting him into bed. After I've been to the bathroom I go back to the bedroom put John's alarm on his wrist and kiss him goodnight. In the morning I have a shower and make breakfast while two carers get John out of bed, make him tea and take him to the bathroom. I spend some time with John in the bathroom, him sitting on his shower-chair, me holding the cup of tea to his lips (he dribbles more than he did a week ago). When he's ready for his shower I leave him with his carers and go to the studio ….
