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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.

Author

floweringink

I am a writer, going blind in Los Angeles. This blog is my story of a slow approach to darkness as I traverse through the rubble of urban life. It is what I see in the withering spaces of my remaining vision. It is humor and despair and darkness and light. It is what I witness as the world slowly disappears.

Horizon

Some days I wander around my house, feeling lost and disconnected, no grip on the texture of the morning or the space around me. I write about having forgotten who I am, but the truth is that I have never really known. My life has been a series of failed attempts at being who I believe others want me to be, failed attempts at being kind, having substance, living with interest and curiosity. I am not curious. I am simply hanging on, waiting for something that never comes because it has no shape, because the edges are dull, because the layers are a fiction, a fantasy, a ruse. I keep hoping that the horizon holds something for me, something that will glue me back together, lift me out of the ground. The horizon lies; it looks close enough to touch but is forever looming, taunting, out of reach.

When I was young, I thought I was supposed to be beautiful, was taught that beauty lives on the skin and the physical impression you leave behind when you have left the room; no-one talked of the beauty on the inside. The inside can’t be seen. I tried to be beautiful, but beauty is the luck of genetics, a luck I didn’t have, so instead, I retreated into shadows and marked up my skin; anything to be unseen. Being unseen is lonely, grows tiresome, has a weight that becomes unbearable. It is also an addiction, a habit, a way to give meaning to your life . It leaves you wandering and lost, looking for shapes in the darkness, coming up empty handed. But still you search.

I came to define myself by what ailed me, by loss and blindness, the afflictions of self loathing and now those that come with the cruel strike of the clock. I will always struggle with the emptiness and the wandering, unable to take shape or give off light, but I also understand that the inside can be seen, through poetry and art and acts of kindness. Perhaps the horizon isn’t a villain after all, but is there to guide the way, to remind us that life is both beautiful and unruly, cruel and abundantly generous.

Telephone Phobic, Demoralised and Smudged Out by Middle Age

I have to start this with a bit of a warning; it is possible I am getting a tad obsessed with ageing; aka, I may be in the throes of a mid life crisis.

For the minute, let’s just say I am in a bit of a contemplative space, steadfastly refusing to accept that I am no longer thirty five while complaining to my husband about my aching hip and arthritic knees. I am also about to have cataract surgery, which despite my knowing it is because of RP, still seems like an old person thing. But, I am thirty five (right?), so what the fuck? Fine, I am not thirty five. It feels like an affront that I am now officially middle aged, no longer desirable, and probably losing my memory earlier than I should because I spent so many years in and out of drunken stupors. But, I can’t deny that I also feel happy. How can one person possibly deal with such an opposition of emotions at once? I wish I could say I do so gracefully and with an open mind, but the truth is that I am not sure I really deal with the emotions at all. I hide under a rock, live inside a shell of inappropriate delusions, pretend I am not afflicted with a myriad of health issues, and sometimes, as the cherry on top of the denial cake, get completely smashed. It leaves me with one very burning question; why the hell doesn’t anyone tell you how fucked up getting older is and how it leaps on you overnight and out of nowhere? I would reject this whole ageing thing if I could, but time is stubborn and cruel and clearly in charge. I am merely a demoralised and somewhat sad woman who is being systematically smudged out.

I have learned however, in my years of acquiring wisdom in some pretty crazy ways, that there is always a flip side. Did I mention that I also feel happy? I do. I am living in a place I have dreamed of living for most of my life, I have an amazing husband and a wonderful family and I am alive. I am lucky; for all of my complaining, I do know that I am incredibly lucky. I am also angry sometimes and sad and confused and frustrated and joyful and playful and lacklustre and droopy and, well, you get it; it’s that human condition thing. At the moment, I feel disbelief about the avalanche of middle age, terrified about and grateful for the impending cataract surgeries, and insanely fortunate to be able to walk down my street and see the beautiful landscape around me. I am also feeling sad because it is getting increasingly harder to read, but hopeful that the surgeries will remedy that somewhat….a post for another time.

Damned statistics

I don’t reblog a lot, but I think this is an important and educational post and felt I had to share.

RD Ramblings

People who know me well will be aware that I’m not a fan of numbers. In fact, I detest the darn things. Maths was my worst subject at school (aside from the much-dreaded sport); I never learnt my times tables; and although I can easily rattle off huge chunks of ‘Hamlet’, I struggle to remember my own ‘phone number. And don’t even get me started on a task in my previous job which involved working out standard deviations from cohort means in order to calculate student prizes.

However, I acknowledge that numbers are important – especially in these days of rising Covid cases at a time when we’re all getting dragged back to the office by our hair, kicking and screaming (did I mention that I’m not looking forward to going back?). In fact, it amazes me that although the daily infection, hospitalisation, and death figures in the UK…

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Palatable

In my middle aged face, I see both echoes of youth and glimpses of what I will be as an old woman, but my reflection today is muddled. I am unrecognisable. My eyes grow cloudy with the passing of days and the shape of my jaw takes on the weight of decades steeped in grief. I can no longer turn the odd curves of my face into something palatable. My features change with the seasons, grow heavy with the stress of caring for loved ones, watching them die. One day I will be the whisper of a wraith, but today I am clay moulded by the hands of time, prisoner to the piercing fingers of the clock. What was colourful is now grey, no green pastures on the other side. I am aching bones and sallow skin and  scars born of an unwelcome wisdom. I am creaking knees and pain so sharp, it wakes me from sleep, although my sleep is shallow now, plucked from my grasp by hormones that betray me, fill me with fire and sadness and anger, all without roots or reason. I am a farce of time, a perpetual act of coming unhinged. I am middle aged. I am invisible.

The Verdict

I won’t draw this post out. I won’t go into a lengthy explanation of my appointment with the cataract surgeon, describe his tie or his demeanour. I won’t write about the drive to the clinic in Waterford or about the battery of tests. I won’t go on and on and on….I will just say this: ON 13, OCTOBER, I BID FAREWELL TO THE FIRST CATARACT!!!!!!!!! Four weeks later, the second will be taken out. I am excited and terrified and will definitely be writing more soon!

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.

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.

Holding onto the Rain (Part 1)

I have been putting a lot of pressure on myself, feeling like this post should be epic, an explosive expression of my feelings and the unparalleled beauty of this country I now call home. But, the words are pale and fall from my fingertips in stutters. It seems that writing about joy is not in my wheel house; I have connected with the words that accompany tragedy for so long, I sometimes fear that I am only half a writer. But, life is also filled with vibrancy, and I want to write about all the shades of life, not just the dark shades; I hope even a fraction of the colours of my new home come through.

I have learned a lot about silver linings this year, about what is meaningful and what can been seen through the deepest darkness. The year began, for me, with unyielding physical pain that increased with the months, and then the world was thrust into battle with a virus that continues to run rampant. I stopped sleeping, I started eating more cake and drinking more wine. I became unrecognizable. I was quietly turning old before my time.

But, coins have two sides and one of them is always shinier than the other. Despite the pain and the virus and the weight, life long dreams came true. My book, “Things My Mother Left Behind”, was published by Potter’s Grove Press, and Joe and I moved to a place I have dreamed of living my whole life, even though I had never been here. I feel so incredibly lucky, and true to my nature, I also feel guilty for my good fortune. Perhaps I am a coin as well, always moving back and forth between the two sides of my own heart, never still, never in rhythm.

The story of our move begins with what I am more comfortable writing about, with drama, with shadows. It begins with a villain, a human vulture who bought our apartment building in Los Angeles and began to dismantle it the day he signed the deed……….

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