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Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.

Month

January 2021

An Old Cloak

I find myself adrift between an old life and a new one, wishing for reinvention and fearing the dark corners of my heart will be discovered, laid bare against the startling landscape. I always manage to sully what is beautiful, slash deceit into that which should be pristine. I long to shed this old cloak, moth eaten and weather worn, but it is so heavy. I am faced again with the reality that no matter which way I turn, or how many masks I carefully construct, it is the same tattered image of myself that lurks in every crevice of the sky. I look to the clouds for comfort, searching for a smattering of memory, my mother’s fingers soft against my cheek, her voice singing me to sleep. I search for an identity that burned brightly, before death and blindness shattered my self confidence.

I can remember a time when I felt, not whole, but able to stand, to inspire and satiate longing. I can remember a time before this shell incapsulated me, when I could look away from the strange curves of my face, forget that I wasn’t what I was supposed to be. I remember a time when feeling different was to feel powerful. I wish I had saved the pieces of the moon that rained down on me when I was vibrant, before I became pastel and mute.

I know that one day I will have to descend from the in-between, that my old cloak will still be with me, firm across my shoulders. But maybe, this time, I will find new threads to stitch the holes, in colours that come from neither memory nor darkness. Perhaps I will find the words to shape new skylines, new textures for what lurks beneath stones and shells and rubble. For now, I remain adrift, not in the shadows, but one of the shadows. For now, I am undetectable.

Sometimes Happiness Holds it’s Breath

I am happy, but unsettled. Monumental life changes during a pandemic are, understandably, wrought with complexities; the thought of holding onto moments of happiness feels somehow criminal, undeserved. Covid has left the world in stasis, and although I am living in a new country, I feel I have only seen glimpses of the town I now call home. Beautiful glimpses, but still…. The virus has stitched a shell over the sun, spread a new brand of silence across the sky. Strangers long for each other in unexplored and unexpected ways. I live my contentment in whispers now, hold joy close to my chest, like a secret. Who am I to have these things, when so much has been lost? I know I am lucky.

Do not confuse feeling unsettled with doubt. I have no doubts about the decision to shed a life that was strangled by heat and the kind of violence only a city can offer up as daily garnish. I have no doubts about trading in that life for one that is awash in green and love and more possibility than I could have imagined. I have no doubts about abandoning the noise and taking the quiet gently into my hands. I am unsettled, but I know I have made the right choice.

For now, I live as if in a dream, on the precipice of daring to imagine that one day I will awaken to the sounds of a new world, one no longer trapped under the thumb of fear . I secretly yearn for the backdrop to reveal itself, to show me who I can become in this new place, or what parts of myself I can rediscover. The mist may have descended for a time, but I finally feel certain that it will clear. This, I now realise, is the nature of hope.

And so, perhaps happiness will hold its breath for just a while longer, wait patiently for me to peel back the layers and look clearly into the eyes of this new life I have forged for myself. I am content in this new longing, in this new waiting. I have already waited lifetimes.

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