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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.

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Hope

Hope

Ever since my RP diagnosis, I have shied away from hope. Not a coquettish kind of shy, but a hand in the face, get the hell away from me kind of shy. I didn’t see the point of getting into bed with hope; I was all about getting on with the business of being blind, dealing with what was real and imminent. I saw hope as a tease, a liar, a villain. I refused to be prey to its allure. Until now.

Hope is still a mind fuck, but for the first time, I really want to be fucked. I want to be taken by hope, my thoughts flooded in it, my skin saturated by it. I want to fall into the surrender of hope, run barefoot, fly, forget.

When RP came into my life 19 years ago, cataracts came with it; in those 19 years, I have seen lots of eye doctors who told me that the cataracts couldn’t be taken out.; they were too small, not ripe enough, needed to be watched. I figured they were here to stay, just like RP, and I didn’t let the sexy face of hope tell me different. Then I moved to Ireland.

A couple of months ago, I saw an ophthalmologist in our town who had something different to say about my cataracts. She asked why they hadn’t been removed and told me that she didn’t see any reason why they couldn’t be removed. She said they must be driving me crazy, and gave me the name of a cataract specialist.

The cataracts are right in the centre of my visual field. Everything I see is blurry because of cataracts. They increase my light sensitivity so much, some days I am in tears from the pain. They give me double vision and fuck up my focus so I can’t read regular books. They have stolen colour and texture from the world and I am not ok with them anymore. I want them out.

I want to see all of the vibrant shades of green that cover this country I now call home. I want to turn the pages of a real book, discover what’s inside. I want to go outside without a hat, open the blinds and the windows on a sunny day and not be in pain.

Next week, I see the cataract specialist, who will decide the fate of the quality of my remaining vision. I know he may say what all the retinal specialists before him said, but this time I am bringing hope along for the ride.

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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