When I was a super-hero loving teenager, I spent a lot of time considering what kind of superpower I would most wish to have. Telepathy? Healing? Invisibility? The ability to walk through walls? I could spend hours happily considering this problem, trying on potential superpowers, debating and discarding them like clothes.

I never reached a conclusive answer then, but now I know. It is the power to stop time at the touch of my fingers, to freeze a moment where it is.

There are moment that I keep. A handful of scattered pearls. Some are golden because they are beautiful, others because they are the last moment before a Bad Thing happened. Each one is cared for, perserved in separate boxes in my mind. I visit them frequently – on long bus journeys, in quiet hours. I palm them, I polish them. I think how perhaps one day I will string them all together into a necklace made of words.

The sticky, sweet taste of mulberries, and earrings made out dangling cherries, and concoted adventures and solemn pacts sealed with pricked fingers, the anthologies written on skinned and bruised knees

Sunwarm stone and dry grass and immensity of stars

The sweep and song of the wind in the old oak just before the rain comes, and secret clearings in the wood

A tall man, and my wet hair, and the scent of wet stone, and our faces meeting with the sureness of pathways of rain converging on glass

And being small and being lifted

And the perfection of my son’s skin, and the unselfconscious sprawl of his knees, and the curve of the back of his neck, and his small hands on my cheekbones, and the press of his warm body into my body, heavy with sleep

And the shifting colours of my husband’s eyes, and the rumble of his laughter and his body seeking out mine in the dark

And the poetry of his hands fixing broken wires and chopping garlic and lifting our squinting, night-wondering son, holding him high and sure in the shelter of his body, carrying him back to his own room and sheparding him into the shelter of sleep

The meetings of hands in cinemas, and on long car journeys

Old vinyl records, and the sounds of Russian Gypsy songs I listened to sitting on the sofa with my grandmother, on one of the last evenings I saw her. Her hands worn and gnarled as tree roots, clasped in mine in a language beyond language, while old songs drifted up towards open windows and tangled in the sway of curtains in the rooom

A backwards glance in a long corridor, at the shutting door of a hospital room on the last day that I saw my father…

All of these and more, spinning through my hands faster and faster, like horses and riders in a merry-go-round, until I cannot hold onto them, until I want to reach out and summon the power that I long to have and shout STOP! and freeze time – until all of this-every colour, every scent, the far-off barking of the dog, the dust motes drifting in their shaft of all light – and all of us-  may be perserved, kept safe like insects in amber, until we are whole, joined in a single, unbroken forever.



Chronic illness is many things, among them lonely and irritating. Like the recounting of dreams, the narration of symptoms holds only a limited interest for others. (Except for my mother, who is prone to obsessing about them, which is its own curse). The plot rarely moves, but the symptoms drone on, nonetheless, like the characters in soap operas. They are profoundly repetitive and self-involved. A miniature Universe of Footballers Wives.

Illness is insular. It becomes a Vessel for One that carries you further and further away. You learn new languages, of pain and limitation. You learn to say ‘No’ a lot. You learn sharp humour, and an entire spectrum of Guilts.

And the longer it lasts, the further it carries you away from the world, until all of it becomes the new normal. Until the absence of pain or weakness is molten gold, like a moment of pure happiness from childhood which you’re not sure was a memory or a dream. Some days the only able part of you is your mind and you dream a lot. Craft ladders into past, and future, and alternate worlds. Some days this lifts you up, and some days sleep is only a different kind of drowning.

The world is pitiless. Even the well-intentioned march on, just as the particular flow and cackle and hold of your illness pulls you further and further away. Until there is no shore left. Only the wind and the waves and the bright, sharp stars.

I don’t want to be in this story, but I am.  We (me and countless like me) sail on.