Painting in bed

All last week I was awake half the night with Poppy who was very unhappy with a throat infection. Pratchett, who died 3 years ago, has been keeping me company through an ebook on my phone. There’s an astonishing kind of magic there, that he can have been dead for years and still be present in a way that’s warm, human, and real to me. I fall in love with books all over again.

Poppy is recovered now, full of life and somehow extra words and communication now she’s feeling better. She sleeps with her hand touching my back or her feet resting on my leg. I am often surprised at my own wordlessness with her. My world revolves around her like a hatchling in a nest, and we venture through day and night together, yet there’s few poems since Tam. Still stoppered.

It feels like I haven’t met her yet. I don’t know who she will be or what worlds she will walk. Sometimes I live so much in her future I forget she is here now. I remind myself to wake up and look and she delights me with a grin and a kiss. She will never be this age again, never again be who she is right now. She’s astonishing.

Rose has been sleeping upright in an armchair to help manage pain from her ear infections. I find myself awake in the small hours, trawling Facebook, unsatisfied, lost. I’ve read all the books I can afford to buy and I can’t stop looking for something, and can’t name what it is. At last I realise simply that I’m lonely. I message Rose, she’s awake too. She comes to bed for a little while and I snuggle into her warmth. For the first time in a long time I unpeel my spikey armor and bring my soft vulnerability to her instead of sharp, prickly fear. We rest in the dark, wordless, holding hands. Thinking not of the past or the future but simply present in the night, velvet soft and beautiful with the child sleeping next to us.

I’m on day 8 of being sick myself, virus gone bacterial and dropped into my chest. I woke earlier this week to discover that a friend of mine, Amber, had died suddenly. She who survived so much suddenly taken from us. I spent the day crying in bed. I’ve spent the week in bed. I hope I’ll be well enough to attend her funeral.

So much illness brings its own fears. Am I annoying my friends? Have I missed some underlying cause? I find myself picking at the threads of my life, trying to work it out. Why am I hurting? Where have I gone wrong? I’m so depleted – how do I recover? What do I need? The picking brings no answers, it unravels certainty, brings doubt to every choice I’ve made. The only thing worse than being sick is also being afraid everyone else is bored and out of compassion, and that maybe you’ve accidentally brought it on yourself. After a while, with an effort, I stop picking and remember that in the middle of the illness is the worst time to ask such questions. I’ve no brain for it. Rest, fluids, kindness. I go back to bed and buy myself another book to read. Help Rose manage the new and unpleasant ear medicine in the hope of keeping her out of hospital.

Today the infection is worse but paradoxically I feel better. Good news is bouying me. I have new support and new projects on the horizon. I’m planning an art exhibition for later this year, I have a mentor lined up for my guide to multiplicity, and I’ve been selling art this week. I’ve borrowed a laptop while I need to be at home which has helped so much. Today I’m starting the painting for my handmade book for prisoners project, in bed.

Chronic illness and caring complicate my work and career goals, but I’m finally adapting and finding paths through. Letting go of the things I can’t have right now, like the time to create a solid primary income. Instead figuring out what works around my needs and my family, how to have the resources to be on call for them and trickle in enough paid work to keep up with my studio rent and my shrink fees. (Thinking of Frida, painting from bed in her body brace) There’s a kind of power in being able to do this, to still engage, to contribute, to feel connected and chase my dreams even from bed. I’m about to close down some aspects of my business and open new ones up that better fit my situation and my skills. Figuring out a model that works for me has been a major focus for the past year, and it’s finally emerging, as is the support I need to make it happen. I’m excited to launch it soon.

So here’s to life, my loves! It’s complicated at times. Full of grief, loss, sickness, plans gone astray. But also incredibly beautiful. I’m still a part of the world, part of the community mourning Amber, part of a team who cares about prisoners, part of a tribe who turn up with lunch and cry about heartbreaking things and laugh over a board game. I am here, in the heart of it, anchored by love.

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