Dancing with Wolf

illustration by Miranda Vincent

There is a new man in my life. He is a Wolf, he is mean, hurtful and dominant. He has been here for over a year, his name is Lupus. At first no-one recognised him, so it was worth getting that second opinion at the hospital, the one where the consultant said the 'L' word and told me his name. I think i already knew, i'd felt his claws gripping my limbs and felt his breath on the back of my neck whenever i tried to do something and found myself too tired or in too much pain. But now i know. Sort of... it may take a couple of years to get a firm clinical diagnosis, but it's highly likely Lupus is the name of my new companion.

The thing is i am very lucky. Some people with this disease are so ill, i have only a mild form. Yet still the Wolf tries to make me change my life. I have to miss parties and events i am too ill for, at times it takes all my effort just to get up. My trainers gather dust as i cannot run. Sometimes it hurts to hold my camera. I'm a photographer but i can no longer do weddings as i can't work more than half a day. At my lowest point it took all my concentration to remember how to swallow. What should have become an automatic response became an effort of will. It was terrifying and I lost my appetite for a while. It's fine, i can still manage about 60% of my life ok. Some days i feel ok. So i am grateful for that. I am not dying, i am not disabled.

It's the little things that get me sometimes. Who would have thought you'd miss painting ceilings, nit-combing your daughter's hair (a vile job but i get tearful when my fingers ache too much to hold the comb) emptying the bin and lifting heavy things like the recycling? Yet i do... the frustration at not being able to do those things is huge. I feel so pathetic. In those moments the Wolf has won and i loathe him.

So i am refusing to dance to his tune. His teeth may be sinking into my joints 24 hours a day, 7 days a week, and he may make me poorly at times, but i shall not let him force me to give up. There is a whole new me he doesn't know about. I am finding new ways to live that he cannot prevent me from enjoying. Sometimes i find myself filled with a new intense joy springing from a heightened appreciation of all that i can still do. Now i am living a different life but i take delight in planning it. Do we not all moan we are too busy with no time for quiet reflection, for rest, never enough time? Not my problem any more. I have time enough now that the Wolf drags me to my bed in the afternoons. I am redesigning my life and it will be better than before. I have time to write, think, read, draw, rest, i can even watch a film in the middle of that day if i want to! Such decadence!

I wrote to a friend of mine that i was thinking of buying a chaise longue and some seriously glamourous lounge wear so i can recline decoratively and receive visitors, or maybe dictate a novel to a handsome young literature student (if you know one please send him to me). Perhaps i can even start other decadent horizontal pursuits like smoking opium or embroidery, really the world is my oyster. Wolfie cannot stop any of that. I shall take rest to new and glamourous heights.

When i wake up in the morning, often tired from a painful night, i stretch and feel the Wolf's teeth sink into my elbows, wrists, knees and ankles. Every little joint in my hands complains as i walk slowly and painfully to the bathroom flexing them. But i am smiling. He thinks he will make me dance a sad little dance of defeat but i am not this body. My breath, mind, heart, joy, love, family, friends, photographs, words and memories are all beyond his reach. The birdsong in the garden calls me to the day, my day. Behind me lurks the Wolf, but i shall surprise him by turning to him and reaching out to welcome him. Then he will have very little power at all.

every mark matters

My art teacher was saying recently that we ought to be braver and less timid with our art. She said we ought to remember that 'every mark matters' and then just go for it. Her words were inspiring, if a trifle daunting, but i decided she was right and that i would give it a go. i could hardly wait to get back to my easel where i splashed around ink and watercolours, and layered chalks, charcoals and pencil with a delicious sense of abandon. This was it - i was an artist now, my materials flowing onto the page as i created my master work. i stood back from the easel, having really enjoyed applying my marks so deliberately and confidently, to find myself looking at one of the most appalling unappealing messes i've ever had the misfortune to put on paper. i was stunned at how childish and amateur it appeared. i saw teacher heading for me. Usually i think of her as a friend, someone i'm rather fond of in fact, but now i felt like i was back in school - how could i hide from her or at least hide this rotten drawing? Would she be cross with me, i'd been doing exactly as she asked hadn't i?! She looked at it in surprise, made a few suggestions (i think rubbing out over half of it was the main one) and then mercifully moved on to the woman next to me who was paralysed by the thought of every mark mattering and so couldn't begin. Thinking about it later i realised that my teacher is right - we should know every mark matters, we should be less tentative. i also realised that the huge gap between our intention and our abilities is hard to bridge. When i watch my art teacher draw i marvel at the confidence of her line, her sureness of execution. For me, what my brain wants and what my hands can do are two very different things. i try to practise as often as possible in the hope this will change, but for now, i must live with it. It was nice to draw for a day as if i believed i could, even if the results were as flawed as ever! 

One good thing did come out of the lesson. My terrible drawing (even my teacher, usually gentle in her admonishments asked why on earth i'd made the arm look like a sausage) was rescuable. Taking her advice i rubbed out, drew over, rubbed out and drew over until i at least had something i didn't feel had to go straight in the bin. i decided i would photograph it and post it here first. At home i would have given up, but i found that being told to keep reworking until it was better is a possibility. Learning to push through and redraw was a good lesson.

Every mark matters, and if you don't like the ones you've made you can always make new ones.

top: the offending drawing, post rescue

left: detail of the face which i quite like and other drawings from the same day in class.