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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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art

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.

Audacity

The debut issue of Kate Duff’s Audacity Magazine is now available, and it is Gorgeous. It is filled with wonderful interviews with a diverse group of artists, including the incredible River Dixon.

Book Launch and Poetry Reading

I know that Tuesday will be here sooner than I can imagine, that I will be holding a copy of my book in my hands, reading poems from it’s pages, still feeling as if it is all happening to someone else.

When I was a little girl, I wanted to be a writer and/or one of Charlie’s Angels. It seemed like having my books in the shop windows and catching bad guys, would make a pretty rock and roll kind of life. The Angel thing really didn’t pan out, but the dream of being a writer and having a book published is one that I have been working toward for a lifetime. It is a dream that, at 51, I am seeing come to life. I don’t forget for one second how lucky I am, how all of the love and support and encouragement I have received has made this dream possible.

I hope that you will all be able to pop by my Book Launch/Reading, which will be my very first ever book launch and reading, so please be gentle! Here are some links:

The reading will be streamed through my Author Page on Facebook. 


You can buy a copy of my book on Amazon 


I will also be selling signed copies through my website 

My endless thanks goes out to River Dixon, a brilliant writer and publisher, a man who makes dreams come true!!!!

Between Chaos and Silence




Jane Cornwell is an extraordinary painter who has been inspiring me and a group of writers, selected by Paul Brookes to participate in his National Poetry Month Ekphrastic Challenge. As we head into our final week, I am filled with admiration for Jane and all of the writers who have taught me so much over these weeks in isolation. My huge thanks go out to Paul, Jane, Ali, Samantha, Jay, Dai, and our newest participant Megha.

Please check out todays post where you can read, and listen to, all of the beautiful poems inspired by this image.

At the end of the month, I will be posting my favorite poems from each writer and my favorite painting with all the poems written in response that painting. Thank you for taking the time to read and listen. I hope that all who are reading this are safe and well and home.

First Love

“Stories from the Edge of Blindness” was my first real foray into writing non fiction.  I decided that I wanted to tell my story in a different way, but to this day I struggle with it. It isn’t the kind of writing that comes most naturally to me.

My first love, as a writer, is poetry.  It isn’t that my poetry is magnificent where my non fiction is lacking, but more that poetry is how my mind works.  It is how the words form in my brain and flow most naturally from my pen. Poetry is a love affair with language; it is life, and feelings and senses, and experiences, broken up into fragments that bleed and stick to the bones.

I fell in love with poetry in a somewhat cliché, but still powerful way.  I was in my early teens and had discovered Sylvia Plath; an icon for depressed and angst ridden teens everywhere, and an absolute genius.  I read “The Bell Jar”, and mixed in with the material in the afterward of the book, was her villanelle, “Mad Girls Love Song”.  It changed my life.  It was then, and is today, a parcel of visceral and imaginative perfection.  Like Plath herself, it is at once cloaked and raw.  “I shut my eyes and all the world drops dead” – simple, complex, powerful and perfect.  I was hooked.

I realized I had almost always seen poetry in all kinds of art.  I remember going to a Picasso exhibit with my step mother, when I was 9 or 10; I didn’t know anything about art or about Picasso, but one of the paintings in that exhibit  taught me what art is really about.  The painting is called, “Portrait of Ambroise Vollard“.  It is a cubist painting of a bearded man, done in mostly shades of gray and blue.  Although the man in the painting doesn’t really resemble my Dad in his features, my Dad has almost always had a beard and, as a 9-year-old, when I saw that painting, I saw a picture of my Dad, steeped in sadness and broken up into fragments.  I remember standing in front of the painting for a long time, unable to tear myself away from the image and the emotions it brought out in me.  I don’t remember any of the other paintings from that exhibit, but I have never forgotten that one.  When I fell in love with poetry, I realized it was, to me, in many ways what that painting was, images in fragments.

For years, all I wrote was poetry and it didn’t occur to me to even try to write anything else, until RP came into my life.  After my diagnosis, I tried to write poems about RP, but I couldn’t; perhaps it was all too new or maybe I wasn’t ready to face the reality of it.  So, at my husbands suggestion, I started this blog and threw my hat into the non fiction ring.  It was slow going; I posted sporadically and initially saw blogging as an obligation, but it has become illuminating and satisfying in ways I had never imagined.  “Stories from the Edge of Blindness” has allowed me to exercise and expand my writing voice; I think it has made me a more well-rounded and braver writer.  It also helped me get to a place where I could start writing poems about my RP journey.

I will always write and I will always write poetry, but I have realized that my life as a writer can be as diverse as I want it to be; I have even started dipping my toes into the well of short fiction.  It can be a challenge to move back and forth between genres, but it is a challenge I now welcome.

 

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