From my path…
Rose petals, thyme leaves and toothpaste. At the end of the garden path sits a child’s bucket with these ingredients steeping in water. I don’t remember if it was attempting to become potion or perfume, but I do recall my childhood being all about creativity. Many childhoods are. Creativity is exploratory, unpredictable and suffused with possibility. It is the essence of childhood. If I wasn’t brewing stinky concoctions, I was building a cardboard washing machine for my dolls’ clothes (I wasn’t devoted to my dolls but making things for them, now that was absorbing), painting plaster of Paris items, modelling withFimo, French knitting, sewing, drawing or making books. Ah, making books.
I have been creating books for almost as long as I can remember. Puzzle books and poetry books, story books, illustrated factoid books about the natural world, all before I hit double figures. The only one of my handwritten creations that I still have from that time is a picture storybook inspired by the Amazonian rainforest and the cartoon, Mr Benn. It was made the same year that my body began devising its own plot twist.
At eight years old the nausea and aching joints were the first signs something was not entirely right. By 12, now experiencing a multitude of other symptoms, having stayed at Great Ormond Street Hospital for Children twice, and no longer able to attend school, a paediatrician with an electroencephalogram diagnosed childhood-onset myalgic encephalomyelitis (also known as ME/CFS – the latter letters standing for chronic fatigue syndrome, the overly simplistic and initially American moniker for the condition).
Since then, I have spent three and a half decades failing to outgrow either illness or creative play. I have learnt to navigate severe chronic illness using creativity to steer the way. This wasn’t a pre-considered strategy. I was as amazed as anybody when, at 18, having assumed I just fiddled around with crafty equipment, I was awarded a place at art college. I attended a total of one day, thanks to my health.
It has frequently felt as if my body were intentionally thwarting every creative advance I attempted. I remember realising, in my late teens, just as I was discovering how much I loved nature photography, that I would not be able to indulge in it often because my muscle strength wasn’t enough to hold one eye shut while I looked through the viewfinder with the other. Nor could I hold the weight of the camera without shaking the shot into a blur.
I remember lying still with my eyes shut for over 21 hours a day. I remember being spoon-fed and held up on the toilet as an adult and hearing that I risked losing my daughter to foster care because my then-husband was leaving us, while I was mostly bedbound. But my attraction to all things arty-crafty never waned, and nothing stays static. Social services, thanks to the creative thinking of a marvellous social worker, provided care so my daughter and I could stay together. My health (still very poor and fragile) began to allow me to feel, if never well, at least not as if I were expiring. Arts and crafts continually